I wanted to share this story with you.
Dear Mr. Earley
I have a son, much like your’s, who became sick while in college. Voices were telling him to harm himself. He climbed onto the top of a residence hall and was standing on the edge because he thought he could fly. The police talked him down and thought he was on drugs.
My son was diagnosed with schzophrenia but was convinced nothing was wrong with him and he refused to take any medication. From that moment on, our lives became a living hell. My son threatened us, destroyed his room in our house, and when we practiced “tough love” and told him he couldn’t live with us unless he got treatment, he walked out and disappeared.
Only a parent who has a child who has disappeared on the streets can tell you how horrible it is to go to bed at night not knowing where your son or daughter might be. We lived like that for a year the first time before my son came home.
I am so angry I had to walk away from my computer just now to catch my breath and compose myself as I write this. Let me tell you what happened next.
I arrived from work one afternoon. It was snowing. I saw a figure on the front porch of our house. I thought it was a stranger because the man looked nothing like my son. He was dirty, in old clothes, with wild hair and a scraggy beard. He was half the size of my son when he left home. I really didn’t know who he was until I looked in his eyes and saw he was my child. I am not certain to this day how he found his way home.
He could barely put two words together. I took him inside, called my husband and he came home. Together we convinced our son to take a bath and I went and got him new clothes. After he was clean, I fed him. He ate like a starved animal. All of this time, we were gently trying to find out what had happened to him and where he had been.
Some moments, he would speak clearly abefore his mind would drift off, as if he were somewhere else. We learned he had been homeless after his money had run out and living in shelters but was booted out because of his strange thoughts. He ended up on the street.
This was MY son.
After he ate and I made up his bed he couldn’t sleep because the voices were telling him to go. I begged him not to. He left anyway.
Months passed. We would get calls from police departments at at night where our son had been arrested, usually on drug charges. We would go get him, bring him home, clean him up and off he would go again because the voices told him that he had to. It was as if we were caught in a nightmare that would never end.
Three years ago when we brought him home, he agreed to talk to a woman from our church who runs a homeless shelter because her name was Mary. [Our son believed he was Jesus Christ.] Mary agreed to get him a bed in her shelter and offered him a job sweeping floors. He agreed and she began working with him every day. She became his guardian angel and he listened to her because he thought she was his mother.
Eventually, she convinced him to see a psychiatrist. Because our son trusted Mary, he eventually agreed to try medication. What happened next, didn’t happen overnight. My son would stay on his medications for a while and then stop. Each time he stopped, his schizophrenia would come roaring back. Voices would tell him to harm himself. For some reason, he felt a link with Mary that the voices couldn’t break.
I am not certain why my son reached the point where he began taking his medications without putting up a fight, but he did and he eventually got better. He began being the son we remembered. He got well enough to move back with us. It wasn’t easy, he still smoked marijuana but he was getting better and the voices stopped.
We had hope. We had our son back. He was moving forward with his life.
I joined NAMI when our son first ran away. It has been a life-saver for me. A real rock. I mentioned to my son our NAMI group had a program where consumers spoke about their journeys. My son attended one. He decided he could do that. The first time he spoke, my husband and I were in tears as he described what he had been through when he was living on the street.
People spat at him, make fun of him, threw things at him. He was beaten up one night. Several boys urinated on him when he was passed out drunk. He defecated in his own pants yet wore them for days, not even aware of what he had done.
Those incidents were nothing compared to what was going on in his mind. He saw terrible monsters falling from the sky. He was convinced his own skin was burning. He thought he had a devil living inside him. He thought he was God and then Jesus Christ and finally Lucifer. Several times he wanted to kill himself.
I apologize for how long this letter is but I want you to understand just what he and our family have been though when I tell you we have been to hell and back.
I was so proud of my son when he talked at NAMI. There was not a dry eye in the house. Everyone came up and hugged him. He connected with people. It helped him — sharing his story with others — and it gave others hope. I know it did.
I attended a NAMI national convention three years ago and when my son expressed an interest in going this year, we packed our bags and headed to San Antonio. The first days were wonderful. My son was running from one program to another, eager to hear new ideas and meet other consumers. He felt like he belonged. Everyone he talked to told him about Robert Whitaker and the speech he was going to give. I was worried but my son insisted on going.
IT WAS A HUGE MISTAKE!
I don’t know anything about science and I am suspicious of pharmaceutical companies and the long term impact of these drugs. Isn’t everyone? All medications are scary. If someone in Finland can get well without pills, that’s wonderful for them. I believe what works for someone may not work for any one else. We each have to find our own path to recovery.
From the moment Mr. Whitaker’s speech was over, my son became fixated on the idea medication was harmful. That night, he met with other consumers who had been at that speech. One of them had stopped taking medications a long time ago and she talked about how she felt better and how Whitaker was right. Medications had hurt her internal organs and caused her to gain weight. I don’t doubt that is true.
I tried to talk my son out of it, but when we got home he announced he didn’t need his medicine anymore. He had been on them long enough. I begged him to wait and talk to his psychiatrist but he refused. Medications are placebos. That’s what he got from what Mr. Whitaker said.
I didn’t think it was possible, but in the short time since the NAMI convention, my son has crashed. We could tell his thoughts were disorganized but he wouldn’t listen. He began staying up all night on the Internet reading about how drugs are evil and we would find him in the morning surrounded by pages of stories downloaded about how drugs kill people. I begged him to take his pills and he got angry.
Today when we came down to check on him — his room is in our walk out basement — he was gone. He left us a long handwritten note filled with nonsense about how a voice was telling him we were devils, our house was haunted by evil spirits and we were trying to poison him. He said God was commanding him to not live with us anymore.
We have spent all day looking for him. The police have been no help because our son is an adult and has not violated any laws.
I don’t know if either my husband or me can go through this again.
I don’t know Mr. Whitaker as a person but assume he has family, at least parents who love him. The person who introduced him said he was a reporter and I’m sure he will say he was simply doing his job as a reporter in telling people about his research from other countries.
I am not against that but I am so frustrated by my son’s reaction to what he heard. In my head, I tell myself, “Okay, the guy was just doing his job.” In my heart, I wish I could hold him and NAMI legally responsible for what is happening to us.
They gave an alcoholic a bottle of whiskey for Christmas and asked him to join in a toast.
I will never attend another NAMI meeting. I will never give one damn dime to that organization. I hope one of its board members has something like this happen to them. I’m sorry, but I can’t help it. I damn them and if my son ends up dead, I believe his blood should be on their hands.
I am not a hateful person, but I am struggling to not hate them all. I am signing my name, telling you my son’s name and giving you our address and phone number but I do not want you to make them public. Just sign me: a Broken Hearted and Angry Mom
As always I welcome your thoughts and comments.
About the author:
That is beyond sad, beyond horrible. I, too, have a son (schizo-affective disorder) and have been through all the trials she described from homelessness and not knowing where he was for months. Today he is court-ordered to take meds. If he wasn’t he would stop on a dime. We live in NH where this is possible. When her son returns, I suggest the family try to get him a guardian and have him committed, if possible, until he is stabilized (keep a diary of his behavior) and then get him court-ordered to take meds.
so sad….this is an important story to read!!!! i’m not liking what whittaker may do to someone with a mental illness. this is very dangerous!
My heart aches for this young man and this family. I would love to see Whitaker do an in depth investigation on the havoc he is causing families with his “truths”. Angry Mom makes a point….I know nothing about the law, but is there per chance a cause for legal action or recourse?
Many thanks to this devoted mom for sharing this story. I hope she shares it with the NAMI Board and especially with NAMI Board Chair and Mad in America blogger Keris Myrick who introduced Robert Whitaker at the NAMI convention. As well, maybe there are ways for this story to be posted on various relevant FB sites via a link to your site so more people can read this account.
Susan, I have posted this blog on four advocacy FB pages. It should get a lot of shares! And it’s a VERY important, although ultimately sad, story.
coming off drugs precipitously is always dangerous…so it’s really really sad that that young man thought that was Whitaker’s message…it is not…Whitaker understand the grave danger that withdrawal poses.
if anyone wants info on coming off drugs slowly and responsibly see,
Psychiatric drug withdrawal and protracted withdrawal syndrome round-up– you can find that information tag in the drop down menu on my blog Beyond Meds
the fact is if informed consent and options were laid out this sort of information on how to safely withdraw would be available and part of all programs and psychiatric training.
it is not!! that is the crime!!
I have struggled with the message of hope for a full recovery with which NAMI fills all of their conferences. It is not the realuty for a significant portion of people with smi, even those on medication and/or othwr forms of treatment. They do not represent people like my brother Paul who never recovered.
Now, by giving Whittaker a platform, they are hurting those who CAN recover on medication.
NAMI has lost their mission…I am very upset over this.
call Nami headquarters and tell them you’ve read Pete Earley’s blog today and the horrible story a mother relates about what happened when she took her child to the NAMI convention…
if they are flooded with calls, they might rethink their recovery peer BS and the invitation to Whitaker and their support of a harmful message!
NAMI national—(703) 524-7600
He’s not a child, he’s an adult. Why not treat him like one? New ideas are difficult to accept, especially those that shake the status quo.
Schizophrenia robs adults of their adulthood. My son began playing with toys again shortly before he killed my mother, believing she was an evil zombie. If we are going to say they are adults, then we need to make it easier to place them into the category of mentally retarded adults who have guardians.
This is not an isolated story–there are a lot of people looking for an excuse to stop medication because they want so desperately to believe that they aren’t sick and don’t need the drugs. Every time I see something about successfully discontinuing medication, I want to scream. I try to respond that such talk needs to be tempered with caution, that it isn’t fair to post that quitting medication can work without clearly stating that it usually doesn’t and that the dangers of quitting medication without the help of a properly trained psychiatrist are far greater than the danger of continuing medication. The idea that psychotic episodes are not hard on the body or that they don’t cause deaths is untrue. They are and they do.
The people who are successful without medication are people who do the research, work with the appropriate specialist, taper off very slowly, and are open to increasing or restarting medications at the first sign of returning symptoms. They are not the majority, especially here in the U.S. Suggesting that this approach can be successful for everyone is irresponsible and dangerous
“The people who are successful without medication are people who do the research, work with the appropriate specialist, taper off very slowly, and are open to increasing or restarting medications…”
Isn’t this part of what findings Whitaker has gathered? Basically, that evidence for treatment of psychotic states seems to indicate that if your goal is to maximize long-term outcomes given that you don’t know treatment response ahead of time, in general trying to not be in meds within an intentional and supportive context is the ideal first step. For folks who do not experience benefit from this, they can try medications, and if not helpful, try a different intervention and if helpful, carefully taper within a treatment context. If withdrawal is successful, great, if not, return to medication if it was previously helpful.
I don’t know many folks who recommend abrupt withdrawal from psychiatric medication (or any brain-altering medication) unless someone is experiencing a clear and severe acute reaction. I think part of the problem of how we talk about psychiatric medications is that possible withdrawal of medications is rarely part of a consent process or included as an essential part of discussions with psychiatrists. Given the evidence, it seems the best chances for best outcomes seem to be on fewest medication for shortest time possible. Patients, doctors, and families don’t have to be adversarial about this. However, it should be made clear that when starting medications, just stopping can make things a lot worse, so this should be part of a decision process to start them to begin with. I bet it would also help if when folks are thinking that they want to stop/reduce their meds, that their families and doctors aren’t instantly adverse to the idea and then try to deter patients. It really erodes trust. Why would a patient take want to continue trying to have discussions with families and doctors if they come to know that they will only try to dissuade them without actually hearing them out and may even start the process to force treatment. Medications can be helpful for some people at certain times, but if not being on meds can also be helpful (and not have the terrible effects on the body many people who take them experience), than having honest conversations about medication decisions that include getting off of them safely is not something parents and physicians should live in fear of.
Most of the people I know who want to stop either aren’t finding the drugs effective or find the side effects too horrible to make it worth it. You diminish the dignity of those with this kind of condition by suggesting that most are too impaired to know what’s good for them. It appears that many of the complaints of those forced to take psych drugs are completely correct – they ARE dying 25 years sooner and they are NOT being re-integrated into society and having jobs and relationships and meaningful lives.
I’m not singing the anti-medication song here. I’m saying that adults deserve the right to make informed decisions, and lying to people or hiding meaningful information from them because we’re worried what they’ll do with it is insulting and paternalistic. They are people, too, and deserve the truth. They have a right to struggle with that truth and find their own path. The idea that “if you take these drugs for life, everything will be OK for you” is a lie. There is no such assurance. There is, at best, a pro-and-con analysis of taking vs. not taking drugs for these conditions, and the vast majority of “chronically mentally ill” people are quite capable of making that kind of decision if they have the right information and some genuine support. We should provide both the information and support and allow these folks to decide based on the truth.
I am so sorry this happened to you. Very early in my son’s illness a friend’s mother ( a nurse) told our teenage son about the side effects of taking risperdone. After listening to her, he started playing with his medication dosage. I wanted to clobber her! Things have worked out for my son but I understand your pain and frustration. You are in my prayers.
Terri
So, she told him accurate information, and you couldn’t accept this? We all want to protect our children, but when they are no longer children, we have to let go, be there to guide, but ultimately let them make their choices with full disclosure.
i’m glad i’m not your kid with severe psychosis.
He’s doing very well, thanks, and with full disclosure. Wish we had full disclosure when we embarked on ten years of drugs and psychiatry.
Hi. 15 years old is a child in my heart and mind :)
Terri
My daughter who is developmentally delayed and bi-polar was on Risperdone (Risperdal) for quite a while and one night we found her in her room unable to support herself, burning up with fever, unable to talk, unable to walk, etc. Called EMS they said that “we won’t get to Kaiser in time, her heart is ready to come out of her chest” so to the closest Trauma center she went. After transferring her back to Kaiser later that day (still not knowing what was wrong with her) we finally find out (107.4 temp) that she was having a “side effect” to the Risperdal called N.M.S. (Neuroleptic Malignant Syndrome) She was hallucinating, defecating and urinating on herself (after they put diapers on her in the trauma unit, she was digging into the diapers pulling feces out). NMS shuts down the central nervous system! What a “side effect”! We went thru all the “precautionary measures” of this medication with the head Pharmacist at Kaiser and her Dr. and NOWHERE did it say anything about this! I am totally against all these psychiatric drugs BECAUSE OF THE SIDE EFFECTS, but I know that my daughter needs them to keep her stable. We also had an issue with Depakote where it was attacking her liver (she was hospitalized for 8 days with this episode). With all these meds that she had been taking she was up to 269lbs 5’2″. Once they stopped the Depakote, she lost over 100 lbs just eating normally (not constant eating which is brought on by the Depakote) . She had been having equilibrium and depth perception problems while on these meds, hadn’t walked at a brisk pace let alone run in years. After she was taken off these 2 meds and lost the 100lbs. I couldn’t keep up with her. All this is so frustrating. I wouldn’t wish this craziness (with the meds) on my worse enemy! BEWARE!
You make a very good point with your daughter’s story, Victor. So glad she is doing better! In reference to my short story, my son had just started taking 2 mg of Risperdone instead of pot and alcohol to self medicate. He was tolerating the drug but then heard about the side effects of taking this drug over a long period of time. We (parents) new about the side effects so it was a tough decision to make. At that time, I was angry with his friend’s mom because I saw a positive difference in his emotional, social and cognitive states and wanted him to remain on the medicine to heal, recover as best he could. Actually Victor, he remained on risperdone for nearly ten years. He was taken off of it five years ago because of his doctor’s concern for long term side effects. Other medications are now keeping his illness in check. Thanks for your comment because medications are not always the answer. Medications can be hit or miss and it just makes your loved one’s recovery even more difficult trying to find the right med or combination of meds to recover the clarity needed to deal with a mental illness.
Terri
Sorry Vicster for screwing up your name.
Terri
what happened is scary…tragedy happens on both sides of the aisle, sadly…it’s called being human…being dogmatic about any particular ideology won’t change that.
and it’s hard and everyone’s pain…on either side should be empathized with…
some people get their lives back after coming off drugs that seriously harmed them…
sharing information and allowing people to choose without coercion what is right for them and their families needs to be the way forward.
we need to embrace the full spectrum of experience…our own idiosyncratic experience cannot be universalized…
everyone matters…
stopping the flow of information is not the answer. opening the doors for all options and providing services for such options is the way to go.
it’s not an idiosyncratic experience to have a child, as many children do, refuse medication. you are trivializing this family’s horrible plight and the damage done by people like Whitaker in the recovery movement. NOT everyone recovers. that is a universal fact across the spectrum of severe mental illnesses, not an idiosyncratic idea. if people did in fact choose wisely, in ways that managed their illnesses, none of us would be having this discussion. sharing information allowing people who are too sick to know they are even sick, has never in the entire history of medicine, abated the symptoms of psychosis. if I had allowed my son to choose last year, he would have starved himself to death in his own bed, which is almost what he did in the weeks that it took me to get some intervention so that he could receive MEDICAL HELP FOR A MEDICAL PROBLEM. I doubt very much he would have thanked me for letting him choose that path forward.
I’m not trivializing anything. I am someone’s child. My mother had to watch me become physically ill and bedridden because of the drugs. I needed 24 hour care for 4 years. The drugs totally crippled me. I’m saying my story of harm is equal to your story of harm.
And yes, my experience is idiosyncratic…I do not value my life above this young man featured in this article. Nor the mother’s who shares her story.
and I’m not recovered…my mind is clear…I have no mental illness…but the drugs have gravely harmed me…I know thousands like us…I would have liked to have Whitakers information a long time before I got it…
information is GOOD.
arguing against it is dark ugliness.
people can make the choices that are right for them IF there are supports for various choices…
and IF they are not psychotic and understand their choices, and IF they are not on the street, destitute, eating from trash cans, exposed to every harm you can imagine.
Even when psychotic, my son was reachable and understood, probably more clearly than me, where his pain lay. It takes gentle understanding,. Most parents would prefer to medicate. When the family practices tough love, they have lost their relative.
when my son was psychotic, he could not remember my name. he would not eat or drink. next time, i’ll send him over to your house, and you can watch him starve himself to death in your bed, instead of his. for weeks I coaxed him to make a good decision for himself while I sat by his bed and put a wet wash rag to his lips to get any amount of water in his body. I prefer to medicate because guess what? that stopped his psychosis. your lack of pity for this woman’s story is astounding. good luck to you the day your son decides not to comply again ever.
The mother’s son is an adult. She is not respecting him. Robert Whitaker is not presenting an either/or situation. Pete Earley likes to be controversial and has stirred the pot with this one. NAMI is overdue to be challenged on its wrongful directives to famiilies and its stance on medicate at all costs
nami’s stance on medications at all costs? HARDLY. too bad a real story of a complete disaster seems controversial. it’s not. those who need medicine must be supported in that effort. period.
I just called NAMI headquarters and told them to READ THIS BLOG.
call Nami headquarters and tell them you’ve read Pete Earley’s blog today and the horrible story a mother relates about what happened when she took her child to the NAMI convention…
if they are flooded with calls, they might rethink their recovery peer BS and the invitation to Whitaker and their support of a harmful message!
NAMI national—(703) 524-7600
And,how old is the child?
age is not the issue. a psychotic child at 17 or 25 has the same inability many times to choose care, when he is too sick to know he’s sick.
Let’s stop infantilizing the adult child and get to work on ourselves.
I remember the first psychotic break my son had at 16. He was hospitalized and the staff treated him as a ‘druggie’, which was not the issue. The cycle had begun. Endless forced hospitalizations followed when he would get picked up by police within a 100 mile radius of home. He too ended up coming back to us just as this Mom described. One time I found him and the bottom of our driveway, asleep in the bushes with his legs sticking out into the street on a blind corner where cars travel 20 mph in excess of the speed limit. For almost 15 years he cycled in and out of locked facilities, always stopping his meds because he thought they were poisoning his body or because the voices told him to stop. He would hop on a plane or a bus and travelled across the country to NYC, to Boulder, CO, and made multiple attempts to go to Alaska, and always returned the worse for it, emaciated, filthy, and without 2 pennies in his pocket to rub together. He was trying to ‘escape’ the voices by finding another environment where he could leave them behind, just as he tried submerging himself under pounding surf on the CA coast, and underwater in pools.The ‘system’ failed him after court mandated hospitalizations time after time—he would get onto medications that would return more rational thinking, but then when released from forced treatment, he would stop his meds and start the cycle all over again.
When he was more rational, he frequently wanted to interact with other consumers, including visiting NAMI meetings to interact, but needing his Mom to facilitate that, it never happened. I knew too much about the consumer movement that is anti-medication and wanted no part in being the one to transport him to make that connection. If he did it on his own, so be it, but it wasn’t going to happen with my assistance.
The hardest thing my husband and I ever did was to yank the welcome mat out from under our son. He would come home, promise to abide by limitations, but just couldn’t uphold his end of the bargain. The voices alway pointed him in a different direction.
It was when we finally said no more that our son started another cycle that led him a different direction. He went to an ATM, put his card in, but no money came out. He thought that the man at the next ATM had taken it from the machine, so he assaulted him. He was taken in, forced hospitalization ensued, and now, 3 years later and after much forced treatment, he has been medicated for long enough that he now realizes how much of his life he has ‘lost’ by refusing medication. It is 17 years that he has struggled with endless recycling, so to listen to him talk now, he has ‘wasted’ half of his life.
I still refuse to let him live with us, and because of that he has found his own path. He now knows himself well enough to know which medications reduce his symptoms the most and actively engages in advocating to be put on them. Yes, they kick his butt, and he hates needing to take them, but he also recognizes the trade off and what his life would be like without them. He is still firmly committed to the belief that the voices that intrude are external, and will not interact with any of his treatment team if they are insistent that the voices come from his own brain. I wish him success in finding staff who will be patient and tolerant with him in this regard and value his input since his choice is to comply with a medication regime that has allowed him to become a functional member of society.
Above all else, I am forever grateful that by stroke of luck, his many assaults have never led him down the path to prison. He is so profoundly psychotic off meds that police have always seemed to go the direction of hospitalization instead of jail.
The ‘system’???— it is just plain sick. I cherish this time of stability, but know that at any moment, the voices may get the upper hand and take control. I’m enjoying my son while I can, and he is profoundly grateful that he is now in control of his life and has found a way to manage the weight gain, sedation, and all the negatives of medication. He is volunteering where he hikes and enjoys physical activities that keep him fit and trim, and has lost weight from the 250 pound range down to a manageable 190. Now he claims there is a life after the chaos caused by schizophrenia. Medication has been the key component.
thank you for that important testimony to the careless direction of the peer recovery movement and to the efficacy of medical treatment, when prolonged, on the mentally ill brain. thank you for sharing what i’m sure was a very hard story that you are sick of telling. and i’m proud of you for never giving up on your child. i’m glad he’s going after his own health no matter how hard that is on him. bless him and bless your family. sincerely, laura pogliano
Love should be the key component. You abandoned your son.
Rossa, you talk about love and you no doubt love your son deeply; but what you just said to Pricilla is devoid of love. To say to another parent who is obviously in great pain, “You abandoned your son,” is unloving, cold hearted and cruel, while claiming that you would never abandon your son sounds arrogantly self-righteousness. Your talk of love is unconvincing if you lack the capacity to express compassion and empathy for other parents who do not share your experiences and views.
INCREDIBLY CALLOUS. and if love cured anything, my son wouldn’t be sick.
Full disclosure is dangerous for people who want to put a cap on their own suffering. First mistake the mother made is to practice tough love. Who advocated that. NAMI? I would never abandon my son to the streets. But, that, unfortunately, was the prevailing thinking, let them hit rock bottom. It doesn’t work. Robert Whitaker is providing information that NAMI withheld with dire results for other families who forced their children onto drugs and refused to accept that the biochemical model of mental illness has huge flaws and devastating consequences. Why doesn’t the mother actually respect her son and learn from him? I am actually pleased that she will not contribute another dime to NAMI. Now if only the pharmaceutical companies would follow suit.
Here’s a withering take on Whitaker’s talk from someone with lived experience: http://www.suicidalnomore.com/2013/07/robert-whitaker-nami-conference-and.html
I am a person with lived experience. The sort of info Whitaker shared saved me.
this is a post from David Healy’s site that covers my story.
I recently contacted the doctor who is responsible for my iatrogenesis — the doctor who grossly over-medicated me and made me ill. I’ve been corresponding with him for several years now, but this was the first telephone conversation I’ve had with him since telling him what his drug cocktail did to me. He rarely says much in response to my emails where I link to the articles I’ve written casting large shadows on the “treatment” he gave me. So I called him and left a voicemail that I might talk to him.
When he returned my call a few days later, we talked for perhaps a half hour. I always liked this man when I was his patient and now that I’ve worked through most of the rage of having been harmed by his treatment, I still like him. His intentions were good. I’m clear on that. I do not think this relieves him of responsibility, but it does relieve me from hating him which simply isn’t good for my soul. Still, I simultaneously appreciate Dr. David Healy’s insight about patients succumbing to Stolkholm Syndrome and have made the same observation about myself. I contain multitudes. There is nothing easy about emotionally processing what happened to me and what continues to happen to so many others.
So my conversation with the man who practiced wild, untested poly-pharma on me was actually quite civil and I felt it was productive too. He listened and shared his view too. He did not always agree, but he was clearly listening.
I want to share a bit of the conversation. He has a hard time believing that what happened to me is routine, that it happens to many patients. He grants me my experience, though, like a good shrink. He believes me when I tell him both that my mind is clear now and that I’ve been gravely harmed by the drugs. I’m not sure he thinks he’s responsible, but he doesn’t challenge my experience. The phrase cognitive dissonance comes to mind. How do they do this? I don’t claim to understand.
So he said something suggesting what happened to me isn’t the norm. That he sees medications working wonders all the time. I challenged him like this, “Dr. M, when you were treating me you thought I was one of your successes, right?” He said, “Yes.” And I responded with, “Well, you were wrong. My life was miserable. I lived in a drugged haze. I slept and worked because that is all I had time to do. I had no passion for what I did and I just lived by going through the motions, flat and empty. My life was hell. I liked you and you needed to believe that I was okay…I tried to please you like a “good patient.” Still if you’d paid attention you know that I was always asking to be put on disability. That’s because it was insane for me to work 8 hours a day when I required 12 hours of sleep because of the heavy sedation. It was also dangerous for me to drive on that pharmaceutical cocktail yet I needed to drive to keep my job. If you had really paid attention you would have known my life was miserable. And I promise you, you have other patients just like me.”
I’m sharing that vignette as an opening because I think most doctors hear stories like mine and think that they are not the ones perpetrating such injury. My doctor is a very well-reputed psychiatrist in the Bay Area, CA. He’s well-known and well-regarded. He is a typical psychiatrist and typical psychiatrists are causing grave harm every day all over this country and throughout a good part of the world. He still seems to believe that I’m an anomaly and that somehow I’m not his problem. Yes, cognitive dissonance.
So I was on a six drug combination including every class of psychiatric drug at high doses that required over six years of withdrawal. I was left severely ill, afflicted by a severe iatrogenic illness: “Withdrawal syndrome“ for lack of a better name. The name makes it sound like something that might last days or weeks but it’s crippled my life for years. Those of us who become this sick (I’ve networked with thousands of folks in withdrawal now) are subject to dangerous care and outright denial of our experience by medical doctors and the medical establishment in general.
What possesses a doctor to prescribe such a cocktail? I don’t think I’ll ever know, but I can tell you how it happened.
The drugs never did “work” and in retrospect they made me much worse…in fact they caused the chronic illness I am now living with. It became clear to me when I was unable to continue working about fifteen years into the (heavy) drugging as my mind and body simply stopped cooperating under a fog of neurotoxic chemicals. I knew I had to try to free myself from them.
So, how did it all begin? After an illicit drug-induced mania I triggered in college, psychiatry got a hold of me. I was told that I was bipolar and would be sick for the rest of my life. One doctor, in fact, told me I would die if I did not take medication for the rest of my life. Having suffered repeated traumas in my life the additional trauma I was subjected to in the psychiatric ward took its toll. I gave in to what they told me, they scared me good including threats to send me to a state hospital for permanent residence. It’s clear to me now this was used only to terrorize me into submitting to drug treatment, it was not a threat that would have been carried out, but I did not know that then.
The truth, however, is that I had a history of trauma that needed tending to, not any sort of brain disease as mental illness is popularly understood. The years of heavy drugging, in the end, is the only thing that made me truly sick. That is, psychiatric and physical symptoms caused by the drugs I was being given for “treatment.” My original diagnosis, bipolar disorder, given as a life sentence never really had much credibility. The tragedy is that during all those years of being drugged during the prime of my life I felt purposeless, flat, barely alive and sexless. I went from being a fit and toned athlete to being 100 lbs over-weight and unable to exercise much at all due to the sedation and nausea. Yes, I had long-term chronic nausea as an adverse effect of the Lamictal. I went through the motions of living while in a fog.
Now, drug-free, I’m quite often too ill to leave my home but my mind is crystal clear. I am motivated and productive, the author and editor of a popular mental health blog that offers alternatives to psychiatry. Having been both a professional in the mental health system and a victim of the same system, I have some interesting and uncomfortable insights into the standard of care. I’m passionate about my work. I have more of a life than I ever had on drugs even while able-bodied and even though now my life is painfully limited in ways it’s hard to convey to those who’ve never experienced such illness and isolation.
In retrospect I see now how one drug led to the next. The “mood-stabilizers” which left me depressed led to the antidepressants which left me with insomnia and agitation which led to the benzos for sleep. They still didn’t get rid of the agitation which led me to the antipsychotics (which made everything worse and in fact my doc kept adding Risperdal milligram by milligram until I was on 11 mg for my akathesia which I now know is CAUSED by the Risperdal—he was treating a symptom with the very drug that was causing the symptom!! My akathisia ceased when I finally got off the Risperdal. We always called it “anxiety,” but it was akathisia.
That big cocktail of drugs left me sedated and lethargic. No surprise. The next step was stimulants. Addiction and dependence to benzos also leads one to needing more and more drug to get the same “therapeutic effect.” And so my dose continued to increase. Unfortunately I’ve learned this happens to way too many people, some of whom never even realize it. Drugs leading to more drugs leading to more drugs. And once in the trap it’s almost impossible to see clearly. To realize what is going on is difficult and perhaps sometimes impossible.
I’ve been free of this massive cocktail of drugs for over two and half years now. The sad part is the greatest amount of suffering I’ve ever endured in my life has been a result of my body adjusting to no longer having neurotoxic drugs in my system. Medically-caused harm and a term that often sounds Orwellian to those of us who experience the protracted version: withdrawal syndrome. It totally fails to capture the grave disability some of us experience.
Still, I have not one moment of regret for having freed myself from these drugs because my mind is clear! I have a clarity of mind that is so beautiful I can cry if I spend time thinking about it. My clarity was stolen from me for almost half my life. I have it back and even impaired as I am, unable to leave the house most of the time, I am grateful.
I once made a list of the myriad insults my body and mind endured. It included over 50, mostly disabling symptoms . What is most astonishing is that I am exponentially better now and don’t experience the bulk of these symptoms anymore, but I’m still very very sick. This, again, is something very few people can conceive of. It’s mind-boggling to me as well and I’ve experienced it.
The fact is our bodies and minds are intrinsically driven to seek wellness and mine is no exception. I am on a path towards wholeness. I don’t imagine it will stop now. There is no going back.
thank you!!! laura
Okay, Pete. Isn’t Blood on Their Hands more than a tad sensationalistic, since all this mother is is upset that her son heard information about meds that has been withheld? How about speaking with mothers whose sons and daughters followed the NAMI take your meds model, and who killed themselves out of despair over forced medications, abandonment to the streets, etc.?
Ask Ron Thomas if it’s sensationalistic. His son Kelly ended up dead as a result of going off the meds that kept him stable.
yes, and his very sick son was homeless for a number of years. for a really really long time. it’s pitiful that an illness that is treatable, at least for the most part, has us driving around in our cars looking for our lost children.
If it is really so treatable, why indeed are we driving around in cars looking for our lost relatives? The status quo “care” isn’t working in these situations. Logically, when this happens, we look for a new paradigm of care, not just keep dancing to the same old tune.
At our annual convention, as through all of our program offerings, NAMI strives to create the space for an exchange of views and perspectives in support of our effort to inspire members, leaders and others as they embrace their life experiences with mental illness. This was echoed in the 2013 Convention theme, The Many Faces of NAMI, and remained a constant throughout the event.
In our efforts to provide help and hope to the millions in need, we acknowledge that there are a broad array of outlooks of individuals’ experiences as well as possibilities. In this, we recognize as well that the exchange of views often implies that sometimes some of these views will be competing. This requires a mindful balancing effort of content and context for which we continually strive.
The 2013 convention session led by journalist Robert Whitaker was intended to provide an overview of new, if controversial research. This speaker does not condemn the use of psychiatric medicine per se but presented some studies that favor more limited use of medications.
It is important to note that NAMI always advises that any change in psychiatric medication must be made carefully in collaboration with one’s physician.
We understand the hurt and disappointment of the mother in this blog. Nobody should have to suffer, and no mother should have to worry about her child when treatment is available. We are ready to offer support if she reaches out to us. Above all, we wish her son a fast, safe recovery. ~ Katrina Gay, National Director of Communications, NAMI
If NAMI wanted to provide an overview of new research, even if it was controversial, why didn’t you get a scientific researcher to present the findings? Whitaker is a reporter, not a researcher or a scientist. As such, he lacked the ability to provide a critical analysis of the results he was espousing. Some of these critical issues include the differences between civil commitment laws in the US and Finland, length of time the individuals had been ill prior to the start of the study and the severity of their illnesses at the time of presentation. There should have been analyses of the strengths and weaknesses of the studies he referred to, including their validity, reliability, and generalizability of the findings to the US population.
The possibility that an individual would stop taking his/her medication after listening to Whitaker should have been anticipated. What information was presented during the same presentation as a balance to the information he presented? How much time was spent cautioning individuals not to make precipitous changes in medication without the assistance of medical professionals? For individuals with histories similar to the one listed by the mother who wrote the letter to Pete, the consequences are tragic.
Katrina:
Whitaker’s a JOURNALIST. What in your opinion qualified him to make ANY recommendations on medication use, abuse or withdrawal? Seriously, we’d like an answer to that. What qualified Whitaker to advise on medical treatments? Nice ‘cover your ass’ response. You need to get in your car, dear, and drive around until you find that mother’s son and help bring him to care. You intended to provide some controversy: Well, you got your wish, in the form of a missing child and another heartbroken parent, and another now homeless person. Whitaker presented some studies? (again, why didn’t a research scientist present studies? I just attended the Johns Hopkins Symposium on Schizophrenia. It was 100% Medical Chat. Every single presenter had very compelling news about schizophrenia, very detailed data to back his work, not merely a best seller Anti-Psychiatry book.) I promise you that this letter by this grieving mother has not even reached its full audience and full sway of influence. If you are standing in front of a judge in a year from now, in a negligent death suit, I hope NAMI uses its national voice to DISAPPEAR on you, the same way NAMI NEVER speaks up on our too frequent tragedies, our jailed children, our incarcerated children, our children lost to the streets…How dismissive of the dire situations we are in, how dismissive of this parent’s pain. Your response is grotesque, in the true sense of that word. NAMI has aligned itself with the cash flow from SAMHSA and the peer recovery movement. Your intentions failed, as they were meant to. How many more testimonials do you need from the families of those most severely affected before NAMI decides to do something besides stamp out stigma and put a kitty kat picture on a devastating disease, a disease that in fact been has been called the ‘worst known to man” by actual medical doctors. Consumerism, and what consumers want, has risen to such a level of import in this country that it now outstrips the beneficence promised by medicine. NAMI IS OUR NATIONAL VOICE. You failed. Laura Pogliano
Katrina,Gay, as National Director of Communications for NAMI, you surely must realize how facile and glib you sound — especially your last sentence! Here you are gushing wishes for this mom’s son to have a “fast, safe recovery” after she has just said that her son is out on the streets, without medications, probably psychotic and destitute, and she doesn’t even know where he is!
If NAMI wants to maintain credibility, it must cut the glib recovery rhetoric and start being realistic and responsibile. It’s a cop out to say that Whittaker doesn’t “condemn the use of psychiatric medication per se”. No, he doesn’t, but NAMI conference organizers should understand psychotic illnesses well enough to have anticipated that Whitaker’s talk could easily lead some people in the audience to believe they should immediately go off their medication. So NAMI should have taken responsibility and highlighted to the audience, both before and after Whitaker’s talk, that it is very dangerous to go off medications abruptly, and the only safe way of going off medications is to taper down very gradually and under the guidance of a psychiatrist.
Thanks, Katrina. Your position makes a tremendous amount of sense, and I applaud your courage for sharing this important information, even if it is threatening to adult parents who justifiably fear for their adult children’s welfare. It is important to know the truth, even if it’s not what we necessarily want or expect to hear. And we should recall that many controversial positions are based in fact, and are controversial only because they undermine “conventional wisdom” or are inconvenient for those supporting the status quo.
Chrisa, NO ONE and I mean NO ONE that I know who advocates for the right to treatment for someone that lacks insight and is seriously mentally ill wants to put everyone with psychosis in the same bucket. Nothing I’ve read from TAC or Dr. Fuller even comes close to that. That is an outright misconception. I have no problem with people having options, but here’s the thing: those who are “severely” ill need to have the option for treatment! This consumer movement has swung too far. I am absolutely disgusted by this story, and I know it is not isolated.
Apparently you’ve never read any of the half dozen articles DJ Jaffe has written for HuffPo or the propaganda on the TAC website. Because Jaffe says exactly that.
I’ve read all of his articles. I applaud you for what you wrote Chrisa, and agree with you for the most part. We’re all learning here and care about our children. I find your change of heart towards those who are the sickest among us very refreshing as a mother. Thanks.
Deborah, it’s no change of heart. I’ve always felt this way. :-)
Would you let a person who is psychotic from Alzheimer’s (this happened to my mother before it affected her memory) roam around the city homeless, eating out of trash cans?
I agree with you. I just wish that those of us who have adult children who lack insight into their illness would not have to fight on all fronts to get them compassionate care instead of seeing them become homeless or incarcerated because their delusions and hallucinations drove them there.
And there we completely agree. Always have.
As another mother of an adult son with schizophrenia my heart goes out to this mother. I will be praying for her son’s safe return. Her story in so many ways is my own story except for the last part about attending this conference and listening to Mr. Whitaker. I can only imagine how she wishes she never went there with her son. My disappointment in what NAMI is becoming just keeps growing. My support from here on will be for the Treatment Advocacy Center. I believe adults DO have the right to decide what their treatment should be for an illness EXCEPT when the illness is a brain disorder that prevents them from knowing what is reality and what is a delusion. When that is the case they are not making a decision with a clear, logical mind that is free from the obstructions of untrue beliefs. In those cases their only hope is having someone who loves them fighting against this current broken mental health system to get them the help they desperately need in order to live as normal of a life as possible. I witnessed my son last week walking along a highway talking to himself, waving his hands all around, weaving in and out of traffic and then putting his hands up in the air like the seas should part so that traffic would stop so he could cross. He is living in a world of delusions that are bizarre beyond words BUT if you tell him he is ill and ask him to see a doctor and get back on medication he will argue with you saying he is fine and not sick. NAMI needs more people making presentations about how people can be helped when they don’t understand they are ill. ALL medications for ALL illnesses have side effects…. Shame on NAMI for having this speaker at their convention trying to deter those who are ill away from their medications. I agree with the person who said that NAMI needs to hope this young man returns home safely. Who is this new leadership of NAMI that would allow this speaker at their convention….they are not the NAMI I once knew. So SAD!!!
QUESTION: I would like to ask those who feel that not being on meds is a logical, practical and viable option, a question: Do you have a moral responsibility to society (your fellow citizens) to stay stable under meds, rather than go off meds and possibly involve (innocent bystanders) into whatever dangerous or extreme actions might occur through, say, a psychotic episode? For example, simply by running onto a busy, dangerous highway (like my schizophrenic brother did; nearly causing a multi-car crash?) Or, for example, when my brother was in a severely psychotic state and created such an extremely dangerous and illegal situation out in public that two innocent bystanders physically attacked him because they felt their own lives were in sudden, life-threatening danger? So what social responsibility do those with mental illness have to their fellow citizens in terms of staying on meds if those meds don’t cause serious side effects? Is this responsibility equal to, say, having the responsibility to stop at a stop sign instead of driving through it and possibly causing others to be severely injured or killed…? Yes, drugs have major side effects and sometimes those side effects could be life threatening and people have a right to make INFORMED, BALANCED decisions about their own bodies. But what about society and innocent people who get pulled into extreme situations caused by somebody off their meds?
this is not about drugs or no drugs — it’s about options. right now there is a hammer called drugs applied to everyone and everything with no discrimination whatsoever.
there are many many ways people find stability without drugs. some of those folks use drugs when appropriate and find them helpful. They find ways to strengthen and heal by other means of support until they don’t need the drugs anymore…
some people choose after responsible experimentation to stay on meds too…but they find the minimal amount in this way, thus diminishing the chances of harm by iatrogenesis.
again this is not either/or and it’s not black and white…
I find it incredibly sad that no one here seems to think anyone or anything ever changes…why is it so hard to imagine that your relative might change, grow, HEAL?? That they might need significantly less or no drug someday…I know thousands of such thriving people…happy, healthy, stable people many of whom once could have been part of these stories told here in this thread and post about your children.
What is so hard for you to understand that some individuals cannot stop taking the meds they are on? What is so hard for you to understand that for some individuals the only way that they can change, grow, and HEAL is by staying on their meds? What is so hard for you to understand the anguish that families face when they watch their loved ones become homeless and eat out of trash cans because he/she thought the devil was living in the basement? Why is it so hard to understand that families do not believe that jails and prisons should be the answer?
I just made it clear that many people do stay on meds and I have no issue with it whatsoever…it’s a completely legitimate choice in a contimuum of care. Did you read what I wrote? Doesn’t seem like you did.
I’m so tired of all the complaints about side effects from medications. My daughter has both bipolar and MS. She takes medications for both of these illnesses. Without the medication for the bipolar disorder, she is extremely manic and delusional. Without the medications for MS, she would possibly not be able to walk. The possible side effects from her monthly MS intravenous treatments are much worse than her bipolar medications but she complains about neither. Her goal is to live a happy life in good health. Individuals who require medications for mental illnesses and are not aware of their need for treatment should be provided them through effective laws. I don’t know of any other disease that requires medications where the patients complain so much about side effects of medications. Instead. They are thankful for whatever help treatment may provide. Time to stop complaining and work toward finding the best treatment that works for each individual.
I find your position extremely frightening. By the way, has it ever occurred to you that many people quit meds because no one will address their concern about side effects?
Also, this attitude got a good friend committed to the hospital by a psychiatrist who refused to take her complaints seriously about a side effect she was experiencing from a med. This is a person who had been extremely compliant and simply wanted a switch of meds. When her doctor blamed her complaint on her mental illness, she became admittedly belligerent at his refusal to listen and he took that as a sign of non compliance instead of doing what he should have done which was listen to her complaints and accommodate her request.
And that is not true that people don’t complain about med side effects from non psych meds. Have you not seen the complaints about statins?
Regarding med side effects, there is alot of research that shows that a low dose antipsychotic effect is alot more effective than high doses over a period of time. How many psychiatrists have explored that with their patients? Or do they just take the my way or the highway approach in insisting that patients stay on their meds come heck or high water?
Monica is right. This is not an either or approach and that is what Mr. Whitaker was conveying. Implying that he is advocating that everyone quit their meds is simply misrepresenting his position, plain and simple.
As one who feels my life was destroyed by psych meds, I am truly sorry for the pain that mother has experienced. I really mean that.
But demonizing people who have had a bad experience with meds is not going to help that mom. Instead, being open to all options is a good place to start.
The problem is that Whittaker obviously did not communicate his position clearly enough to ensure that vulnerable people in his audience understood they should not run out and immediately go off their meds. At least one vulnerable person in the audience — the son of the heartbroken, angry mom who wrote to Pete Earley — has relapsed and is on the street in a psychotic state again directly as a result of Whitaker’s talk at NAMI.
If Whittaker is going to talk to people with a history of psychosis about medications, he has an ethical responsibility for ensuring that these individuals realize the dangers of going off medications abruptly without professional guidance. Whittaker was negligent for not doing this, and so was NAMI negligent for not taking steps to make sure it didn’t happen.
I agree, major negligence. I hope there’s a lawsuit against Whitaker and NAMI.
With all due respect, Mr. Whitaker has always spoken responsibly about the meds issue. In my opinion, he is being unfairly blamed for a conversation that should be started by every psychiatrist who prescribes meds but isn’t, Why are they being letting off the hook?
The problem is most of them take a “meds for life” approach and as a result, patients don’t feel comfortable discussing their concern and tragically cold turkey the meds because they can’t get any support. This happens whether someone has psychosis or doesn’t. If you are interested, google Dr. Chris Gordon, a psychiatrist who takes Prozac who has spoken about this issue.
By the way, as one who had to resort to an internet withdrawal board to safely taper off of meds, many psychiatrists are clueless about helping their patients do it safely. They advocate a way too fast approach.
Additionally, many of them suggest an every other day dosing regiment which puts the body in withdrawal and is the equivalent of a cold turkey taper.
plus, this important point: HE’S NOT A DOCTOR. he’s a journalist.
I too am a Broken Hearted and Angry Mom. It is hell to see your child, although they may be an adult, they are your child be thrust into world taken advantage of, etc., come home half, think they will receive “good” information only to see that they have been thrust into a world where they are taken advantage of. I agree with the Broken Hearted and Angry Mom – she has every right, to place blame on NAMI for being so irresponsible to have a speaker such as Whitaker. Of course his speech is irresponsible. For those of us who choose or not choose to be on a roller coaster, these are our sons and daughters and they are people who deserve much better.
I too struggle with the message from NAMI and after reading know my instincts are correct. I don’t the answer, I only know the pain and suffering of this Mother and thank her so much for sharing her story, and am heartbroken as well. I wish her well, her husband well and her son well. Respectfully.
I was diagnosed in 1971 when few psychotropic drugs were available. The director of the childrens health services, a psychiatrist, told me I had a seroius chronic mental illness and would always need medications and life long treatment. He also told me that all illegal and street drugs were poison to me. Since that enlightening conversation, each time I got off my meds I became ill. I finally learned after losing jobs, friends, family and almost my life. I had all the excuses – side effects, belief that I’m cured, belief that I don’t have a mental illness… I read the medical journals –
shortened life span for the mentally ill taking meds, major organ breakdown and so on.
Heres the reality – you do whatever WORKS to keep your mental illness in check. Drugs, therapy, meditation, Eastern practices, WHATEVER –
Life is short. Quality trumps shortened lifespan and annoying side effects.
Within six weeks of my first psychotic break a responsible doctor informed me of my serious illness and by the time I left his office I was a teenager fully aware and understandably frightened that my life was forever changed. I was different and needed to take special care of myself.
I have a feeling doctors are no longer lecturing, teaching and admonishing the newly diagnosed mentally ill on the severity of their illness and the grave importance of treating it. Mental illness never goes away. Those that say it does – never had it in the first place.
Like any other human condition, you have to recognize it, respect it, and work with it, to overcome it. The thousands of homeless and incarcerated mentally ill are proof that our society has failed to encourage such basic loving decency.
People are homeless because the world runs on money and the homeless don’t have any/can’t earn any money.
Criminals belong in jail (presumably they had a fair trial). People make choices, people make mistakes.
You wrote “each time I got off my meds I became ill”
Your brain might have been suffering from drug withdrawal. “the brain sprouts about 50 percent extra dopamine receptors.”
I feel terrible for the mom who wrote the letter about her son hearing Whittaker speak and believing his message of medication harm. NAMI national is going away from the original mission that the Moms who started had when the organization was formed which was to be the Family Voice on Mental Illness. Including consumers was a good idea but there are also many consumer organizations that families are not welcome to join unless they share the anti treatment philosophy that most of them have. I think that NAMI national has reached a crossroads and should decide if they want to keep the families as members or perhaps they want to become another consumer survivor organization. Shame on the NAMI board for approving Whittaker’s presentation. If they wanted to present an alternative view, why not get a researcher to speak who could back up his opinions with many studies done in the US. In my experience working in the medical profession for 30 years and in my second career working in a large county mental health system in California, I saw there were many different stages and types of the same diagnosis. I had breast cancer but am still alive at age 70 but my Mom died of the same illness at age 53. Her stage was different from mine and she did not have the opportunity to take Tamoxifen which had a lot of side effects but has kept my cancer in remission. Medication side effects are common with many medications but the devastation of an illness is worse than the side effects in my opinion. I am also the mother of a son who suffers from a severe form of schizophrenia who is only living in the community because he takes clozapine because nothing else stops the loud, threatening voices. If you have not experienced those type of horrible voices, you cannot know how impossible it is to function in the community. He also has a genetic blood clotting disorder so he also has to take large doses of a blood thinner because when he wasn’t on them, he developed a life threatening blood clot that almost killed him but was saved by a stent placement. So there will always be disagreement and some people may have the wrong diagnosis because maybe they are seen when they are psychotic from street drug use. For others, certain medications are lifelines and those people should be respected and listened to by the anti medication groups. Families also suffer mostly in silence as the secondary victims of the mental illness. Families do not want to see their relatives end up in the criminal justice system so we encourage medications as a way to stay out of that system nor do we want our relatives to end up suffering the streets. Until there is a better way to treat the symptoms, the right meds at the appropriate dose can be a way to have a decent life in the community.
Monica, if Whittaker understands “the grave danger that withdrawal poses” — as you say he does — then he has an ethical responsibility to make sure his audience understands that too. The heartbroken, angry mom’s letter to Pete Earley is testimony that Whittaker failed to do this. So Whittaker is either unethical or just a poor communicator — or maybe both.
oh, believe me as a writer and teacher I know that it’s impossible to control what people take away from what one says…even today…in this thread someone responded to something I posted and it was clear she hadn’t even read my post…maybe she read the first sentence…but her response showed she’d not actually read the whole post.
people hear what they want to hear even if they or are in the room when someone is talking…all too often…I am sure you too have had this experience…it’s human and we all do it…
sharing information remains of utmost importance.
I am a schizophrenic who has heard Whitaker speak. He did speak of the dangers of stopping psychiatric drugs. He says in response to antipsychotics “the brain sprouts about 50 percent extra dopamine receptors. It becomes extra sensitive. People that go abruptly off of the antipsychotic drugs, do tend to have severe relapses.”
Pete, I write from the perspective of someone who has been developing and running healing communities for individuals with serious mental illness since 1975. These are communities that provide comprehensive, compassionate, community-based care, infused with a collaborative process that helps each resident to achieve their highest level of recovery. Part of the professional support includes offering psychiatrists who help each person to optimize their medications. Basically, this is an approach that seeks the lowest beneficial dosage and also allows the person to slowly reduce their medications to zero, if they wish and if they can tolerate that. Most don’t choose the ‘zero’ option, nor do we advise them to do so. My experience is that most of our residents still find benefit from medications and are more willing to continue using them because they have been fully engaged and educated about the benefits and the potential side effects of their usage. Our collaboration also includes our psychiatrists’ advice NEVER to abruptly cease the use of medications. These are powerful agents and immediate cessation may imbalance the brain and be a cause of psychosis itself.
In short, amidst the angry voices on both sides of the debate that has been triggered in this Blog, I would like to offer an option that I hope can become a middle and more effective ground. Bob Whitaker has pointed out that society’s excessive focus on medication usage over the last few decades, which has too often been driven by a one-size fits all approach, has backfired. Relatively speaking, we have too frequently over-medicated willing users with negative, serious side effects being the result. In addition, our forceful, rather than collaborative approach, has led to a reaction where 40% to 50% of people who have been prescribed psychotropic medication are ‘non-compliant’. On the other side of the bank, we have the anti-medication group that can be just as dogmatic and non-collaborative.
I know Bob Whitaker and know that he would never advise anyone to abruptly cease their medications. It is unfortunate that the son of the mother who originated this Blog entry chose to do so. It is likely with his level of psychosis that medication usage would continue to be beneficial for this young man. I also know that Bob Whitaker does not say that no one needs medication. He is more moderate than he has been described in the words found in this conversation.
It is also clear to me that sometimes involuntary medication must be used and that its use can be life-saving.
Goodness, there are no easy answers, but there are more individualized answers that are being found via respectful collaboration and guidance. These answers can be generated between the psychiatrist and the patient when time is allowed. The paradigm of the 10-minute Med Check mode of appointments seldom, however, allows for the time this is needed… we need to change this.
Yes, there is much to change and positive civil discourse is the best path for the creation of this change. Dogmatic arguments from the opposing banks of the river will not work. We must find a middle ground where effective dialogue can occur. We need a new mainstream.
Virgil Stucker
CooperRiis Healing Communities (Executive Director)
Foundation for Excellence in Mental Health Care (Chairman)
Virgil,
I have alot of respect for your work but with all due respect, people can get off of medication who have schizophrenia. People don’t stay the same for life. To discourage them from getting off of it doesn’t seem right, especially when a very slow taper (5 to 10% of current dose every 4 to 6 weeks) can greatly increase the odds. Of course, a great support system also needs to be in place.
I am also horrified that you advocate involuntary commitment. Many people have equated their inpatient hospital experiences to chemical rape. They have said they would rather be dead than go to a hospital again.
Dear AA,
Thank you for your response. I, too, know people who have had psychotic experiences and have been able to move forward with their lives without medication. I also know some, who have had repeat psychotic experiences, who choose to use medications during extreme states. Yes, as you have written, “People don’t stay the same for life.” I think also of some people like Elyn Saks, whose journey I deeply respect and who is open about her choice to continue the long term use of an anti-psychotic to help her avoid life-impeding psychosis.
In regards to involuntary commitment, I am reminded of a west coast leader in the ‘consumer’ movement, who today leads a successful life but also told me that had he not been involuntarily committed at one point he would have died. He is glad to be alive.
In my work, where I have personal and professional responsibility for the safety and welfare of individuals with the most serious of mental health challenges, I am sometimes confronted with a situation where a person’s extreme state requires intervention because their behaviors pose a significant risk to themselves or others. In some of these situations I have walked with them and the police and helped the person to retain their dignity, as far as possible, during the intervention. I have sometimes accompanied them to the hospital…sometimes within a few days the person has been able to return to our community. I have never had anyone say to me, “I wish you had not done that to me. I would rather be dead.”
I have trouble with dogma, whether it is the dogma that has caused society to overuse medications or the dogma that says that involuntary hospitalization should never be used. Such dogma runs roughshod over individual needs and the responsibility that we as society have to protect the most vulnerable amongst us when they cannot protect themselves.
What we need are recovery-oriented approaches to hospitalization. I urge you to review the work of Recovery Innovations in Arizona, where the “Living Room’ concept of hospitalization has been created. Their Living Rooms (which can provide involuntary care) are now located across 10 states. Over 60% of their staff are people who have lived with and recovered from mental health challenges. These are the kind of settings where respectful care can achieve good results with individuals who are experiencing extreme states, including full blown psychosis.
Virgil Stucker
Well, I’ll say this dear “NAMI mom”. Have you asked yourself why your son left? I sent my own family to hell long time ago after I was forcibly detained and medicated. I put my story below (not the link because it would be moderated).
I can say this: as a survivor of psychiatric abuse I have a lot to thank Bob Whitaker, and many others before him, who have exposed the psychiatric fraud for the quackery it is.
Your son could still be with you know if instead of forcing him into drugs you’ve had tried to understand what type of stressful situation he might have been going through to push him to psychosis. You have only one person to blame for your current situation: YOURSELF!
===================================
Sent to the NY Times Editor.
Dear New York Times editor,
I am writing to you concerning your invitation for comments regarding
forced psychiatric treatment. I apologize for sharing my story
anonymously but as you will see, this was a very humiliating experience.
One of the many unfortunate effects of psychiatric misconduct is the
continued stigma that exists in all things related to mental disorders
so I am not ready yet to go public with this; maybe someday I’ll find
the courage to discuss this openly but I am not there at this time.
I begin by saying that I wholeheartedly agree with what Dr Gordon had
to say. In my own case, as a result of the experience, I lost all
contact with my parents and siblings. I don’t know what they are up to
these days and frankly, I do not want to know. So in my case, my parents
following the advise of a psychiatrist to commit me has resulted in
them losing a son and in me losing my parents for all practical
purposes.
I am an American male, of European origin, in my late thirties. I
only hold American citizenship and I only held American citizenship when
this thing happened. I am highly educated with a scientific doctoral
degree from one of America’s best schools. During most of my adult life I
have struggled with a condition that was diagnosed as Obsessive
Compulsive Disorder, OCD. The funny thing is that psychiatry dumps into
this disorder all kinds of different types of mental distress. In my
case it’s an exaggerated fear of contracting HIV through casual contact.
Now, I don’t mean to say that this condition doesn’t cause me distress.
However, it doesn’t warrant the type of abuse I am about to describe.
When this episode happened I was married; my ex-wife was of great help,
which probably avoided the ruin of my professional life.
As the vast majority of people, I had a neutral position on the whole
field of psychiatry. I assumed that it was just like any other branch
of medicine, tested and confirmed by the scientific method to be 100%
accurate both in diagnosis and prediction. All that changed a few years
ago when I was involuntarily committed to a psychiatric institution and
forcibly drugged in the European country where I was born for treatment
of OCD.
Unlike the laws of the United States (which are largely the result of
the 1975 SCOTUS case O’Connor v. Donaldson), the laws of that country
afford psychiatrists all-encompassing power to commit whomever they wish
and to drug any individual against his/her will. The O’Connor v.
Donaldson case was a victory for human rights and, as it usually happens
in human rights issues, the US has been the leader on that area. In
that country, any psychiatrist can order to involuntarily commit and
drug forcibly any patient in cases in which a psychiatrist determines it
to be necessary, regardless of whether a finding that the patient’s
life or a third party’s life is in danger exists. I was forcibly
detained; tied up for almost one day and then forced to stay in 2
different mental institutions for several months. The psychiatrists I
worked with during that time are amongst the most arrogant people I have
met in my entire life, which shows that, if you give anybody such
power, they will become inevitably corrupt. The humiliation that I
endured will stay with me for the rest of my life. My parents asked the
psychiatrist to commit me. Out of respect to them, I did not invoke the
protections afforded by international treaties, of which both the
European country that detained me and the US are signatories, to
citizens detained against their will in a host country. So I was pretty
much on my own, with the help of my ex-wife to fight this. I was lucky
that the company I was working for at the time here in the US was very
patient with me; my ex-wife was able to manage the situation with them,
but those psychiatrists who committed me couldn’t care less about my
professional situation here in the US or whether I could be laid off for
not showing up to work.
And then there is the forced drugging and the side effects. The
American Psychiatric Association, APA, recommended pharmacological
regime for OCD treatment involves the prescription of serotonin reuptake
inhibitors, either modern SSRIs or older ones such as tricyclic
antidepressants -like clomipramine-, at doses that are 2-3 times higher
than what is prescribed for normal depression. It is normal practice to
supplement the prescription of these antidepressants with antipsychotic
medication to “strengthen the effect of the antidepressant drug”,
whatever that means. I continued with the medication regime upon coming
back to the US. Over the course of 12 months I was prescribed (though at
different times) escitalopram, clomipramine, sertraline, risperidone,
olanzapine and lorazepam. Even though the APA also says that Cognitive
Behavioral Therapy, CBT, alone is more efficient than meds for the
treatment of OCD, I was made very clear that unless I agreed to be put
on a medication regime, I would not be released from my involuntary
commitment. So I had no choice but to agree to be put on meds if I
wanted to get out of there. After I refused to continue with the drug
regime, I have not been back to that country out of fear that I could be
committed again.
Upon my return to the US, I started to be treated by a psychiatrist
(meds) and a clinical psychologist (CBT). At the time of my admission to
the European hospital, I was given comprehensive blood tests that
showed all my biological markers within normal range, those of kidneys
and liver in particular. Upon learning of my medication regime, my
American psychiatrist ordered new blood tests that showed clear kidney
impairment.Other markers looked normal. I was sent to a kidney
specialist who, after all kinds of tests, couldn’t find the cause of
kidney malfunction other than the meds I was taking which were
“supposed” to be harmless. A few months later, I had new blood tests and
this time not only the kidneys didn’t show any improvement, but it was
the liver markers AST/ALT that were out of range. An ultrasound test
showed also that I had began to develop fatty liver. After months that
showed no improvement of these two conditions -in addition to the fact
that I had been experiencing other side effects associated with
antidepressant/antipsychotic such as increased cholesterol levels and
weight gain-, and against the advice of my American psychiatrist, I made
the decision of stopping all medications. One month and a half later, I
had a new blood test performed on me and bingo!; the AST/ALT markers
were back within normal range while the creatinine serum level went down
to normal levels too. A few months after stopping all meds, my
cholesterol levels went back to normal. I am not a medical doctor, but I
have an excellent doctoral education in a scientific field. The data
collected from my case shows very convincingly that in my case these
medications were causing significant side effects that risked to cause
long term damage to my kidneys, to my liver and to my overall health due
to the elevated cholesterol levels.
I learned several things from this ordeal,
1- Psychiatrists in general love to prescribe drugs. They will use
any excuse they can find to do it, even if, as it is widely admitted,
the field of psychiatry has yet to find a single biological marker that
can be reliably described as the cause of any mental disorder. As to why
this is the case, originally I thought it had to do with psychiatrists
desire to be considered as equals by doctors who practice other
specialties of medicine, a reason that doesn’t speak very highly of
psychiatrists’ inferiority complex but which is understandable. However,
after the episode of my involuntary commitment was distant in time, I
began to research on the topic and I am appalled at what I found. I was
made aware of the work by US senator Chuck Grassley which exposed the
undisclosed financial ties to big pharma of “prestigious” psychiatrists
such as Joseph Biederman, Charles Nemeroff, Martin Keller or Alan
Schatzberg -the latter served as president of the APA even after the
extent of his misconduct was publicly known-, the APA, and its front
groups such as NAMI; right now I am more of the opinion that it has to
do with a more mundane reason: greed. All these people engaged at some
point or another in ghost writing, a practice that consists in that
somebody hired by a pharmaceutical company writes a book or an article
promoting a drug or a given clinical practice. The article/book is then
presented as authored by the psychiatrist in question. The end result is
that few people question the findings of the work, regardless of its
scientific quality, because it is promoted as authored by some
“prestigious” doctor. Of course, the “prestigious” doctor is duly paid
by the pharmaceutical company for the cooperation.
2- The guides of the APA, such as the DSM, have far reaching effects
beyond the American market. The DSM was used to give me the OCD
diagnosis in the European country where I was involuntarily committed.
If the DSM, as it seems to be the case for DSM5, begins to promote the
over use of psychiatric drugs, its effects will be felt not only here in
the US but worldwide, which takes me to the third point.
3- The US is, as it has been in many other instances, a pioneer in
the protection of individuals’ rights, in this particular case
psychiatric patients’ rights. A series of opinions by the US supreme
court in the seventies, O’Connor v Donaldson (1975) and Addington v
Texas (1979) in particular, limited the ability of American
psychiatrists to involuntarily commit patients to psychiatric
institutions except in those cases where the life of the patient (or the
life of a third party) is in imminent danger. Subsequent decisions also
limited psychiatrists’ ability to drug patients against their will. All
this is relevant because I was able to make the decision of stopping
all medications without the fear of retaliation only because I am an
American living in America. This decision might have meant a trip back
to the psychiatric ward in that European country, despite the severe
effects I was experiencing. That is not to say that psychiatrists do not
abuse their power in the US, there is plenty of evidence to the
contrary, however, their ability to abuse patients is severely limited.
Ideally, we should have the current practice of psychiatry disbanded
and the DSM abolished. That is unlikely to happen, at least in the short
term, because there are so many special interests (the APA, big pharma,
the FDA) interested in maintaining the status quo. However, we can all
fight so that their negative effects are attenuated, not only for our
fellow Americans but also for the sake of millions of innocent people
who live in countries which are less protective of patients’ rights and
who are likely to be abused by the psychiatric establishment of their
countries with an expansive revision of the DSM.
In the context of his article we should remind everybody Dr Gordon’s
words “psychiatrists have limited capacity to reliably predict
violence”. Lowering the standard for civil commitment will only result
in abuses like the one I endured becoming more common place. We are all
appalled for what happened in Sandy Hook. But giving psychiatry more
power to commit whomever they wish is not the answer. I have to admit
that I have had a very hard time in the last month when I began hearing
people from the right calling for an easing of civil commitment
standards as their easy answer to solve tragedies like Sandy Hook’s. As
the Norwegian massacre shows, giving more power to psychiatry to commit
people will not prevent these massacres. It will however make
psychiatric abuse more common place in America.
Sincerely yours
blimey, what a lot of hot air over someone deciding homelessness was better than home.
I know lots of people who have made this choice. Some with mental health diagnsis, some not.
I know people who are not diagnosed with schizophrenia whose behaviour gives me much more grief than those with the diagnosis.
I know someone who killed themselves. There were many factors but one was because the services forced her to take drugs she did not want.
The young man is a person with ideas, a family who he reacts to and other things going on in his life. His family have ideas, a son who they react to and other things going on in thier life. To reduce the son to a diagnosis and drugs and to reduce the family to carers whose primay role is to enforce drug compliance or risk homelessness is to turn both into cartoon characters.
Get over yourself, all of you. All our lives are more complicated than this. One of Mr Whittaker’s messages is that treatment programmes with good results see us all, patients, familiy members, carers, friends, as people who try our best to get on with and understand each other buty that maybe, sometime, we need some help to do so.
If the son thought that Mr Whittker’s message is that drugs are placebo he made a mistake. Maybe a drastic one. We all make mistakes. A friend of mine made a similar mistake a few decades ago, long before Mr Whittaker came along. Lots of people make the same mistake.I can understand why, the drugs are horrible and people don’t like the bad effects. Also people can look up the dangers on the internet or talk to their freinds about it. Hey ho. The way to minimise the risk of this is by having good drug withdrawal programmes and by making sure drug taking is voluntary and with good information provided.
Does Robert Whitaker have blood on his hands?
See his response here: http://www.madinamerica.com/2013/07/my-reply-to-pete-earley-do-i-have-blood-on-my-hands/
I feel this mother’s pain, but I am concerned about her reaction to NAMI and the Whitaker presentation. It is good for all of us to have dialogues about medication and treatment for mental disorders.
Perhaps some other trigger than Whitaker’s views would have brought on a relapse for her son. That unfortunately is the unpredictable nature of the challenge involved with the major mental illnesses.
I have a son who was a chiropractor in Virginia Beach but spiraled downward and eventually went missing about four years ago. He refused help offered by family members and friends. I pray for his safety and a word from him.
Another son has been diagnosed with schizophrenia,is high functioning, living on and off his meds in an apartment with some supervision by the regional human services agency.
I joined NAMI and serve on the board where I live, grateful for the educational programs that have helped me.
I am a retired journalist now working on a book from the point of view of family and friends and how they are affected by the loved one’s illness. This mother’s experience is just one of the many stories I want to acknowledge and share in my book, tentatively titled, Balancing on the Brink.
As always, Pete’s three comments in his update today were very astute.
Why do you blame someone for sharing the truth?
I’ve known hundreds of people through my professional life who have willingly taken their prescribed medications and have led horrible, pointless lives and died young and miserable. Many don’t even get symptom relief, or get it initially and have it wear off, leading to higher dosages, more side effects, and increasing disability. I’ve also known dozens in my non-professional life (smaller numbers only through less volume of exposure, as I wouldn’t meet these folks in an ER or on a crisis line) who have gotten off all medications and are no longer psychotic, or are so only episodically and function well in society. And I have known many who function well while taking psych meds, and more power to them.
Whitaker doesn’t advocate for individuals to suddenly stop taking medications – he only says that there are a large proportion of people maintained on drugs long-term who may do better if they are weaned or were not put on in the first place. He provides good, solid, scientific evidence for all of this. He even goes so far as to say that rapid withdrawal from antipsychotics is likely to result in relapse, and recommends AGAINST doing so.
I daresay he’d also advocate strongly against threatening an adult child with homelessness for wanting to consider getting off medication. I would imagine he’d advise the parent to take some time to talk to the adult child about why it is they want to try this, and what safe ways might be available to safely test it out and see if it could work for him.
We know that those diagnosed with chronic mental illnesses (aka schizophrenia and bipolar disorder) are dying 25 years earlier than the rest of us, on average, and we also know that a good portion of those early deaths are caused or contributed to by psych medications, due to diabetes, heart disease, and other conditions that are side effects of the drugs. Knowing this, and knowing that a sizable percentage of recipients may do as well or better without the drugs, doesn’t it make sense to try and get as many people off the drugs, or onto low dosages, as is humanly possible?
The situation described is sad and scary, but science is not based on individual anecdotes. It is healthy for us to have a real and honest discussion of the pros and cons of medication, rather than reacting in a panicked way when adult patients, who have a right to make their own decisions just as you or I, make choices that we worry about or think are harmful. I am sure the son in question is learning things as he goes, and may now have learned that precipitous stopping of medication is a bad idea. Maybe someone will help him find a way to taper his down and see if it can work. Maybe it will, and maybe it won’t work, but I believe as an adult, he has a right to try and make it work and learn from the consequences of his decisions. And those decisions should not lead us to stop sharing the real truth about these drugs. Some people DO have better lives without them. All families and clients have the right to know that and act on that knowledge, even if it scares their parents or care providers.
If this was science, why wasn’t it presented by a scientist?
Is that a critique of the author, or of the so-called scientists who avoid talking about this information?
Something is science if it’s supported by multiple studies over time that are well designed and that report the same outcomes. The person reporting on it is a lot less important to me than the actual scientific process of those who did the studies.
That being said, there are definitely plenty of research psychiatrists who have made the same or similar observations, some as far back as the 1970s. Look up Loren Mosher and Soteria House, or the Open Dialog program in Finland, which has been in operation continuously since the 70s and has the best schizophrenia outcomes in the world BY FAR, and which uses the kind of approach Whitaker is advocating for. Look also at the WHO studies in the 1990s that showed that schizophrenia-diagnosed patients in India and Brazil fared better than those in the US or the UK, with the most significant difference being the low levels of antipsychotic usage in those countries.
There are also plenty of credentialed scientists who are completely sold out to the pharmaceutical industry. Joseph Biedermann was almost singlehandedly responsible for the unbelievable increase in “juvenile bipolar disorder” diagnoses over 10 years. He was later admonished for fudging his findings in order to get the results the drug company funding his research wanted, and the REAL scientists finally acknowledged that these kids that Biedermann identified as Bipolar don’t grow up to have bipolar disorder in general.
So I don’t assume that someone who is a “scientist” is being scientific, nor that a non-scientist is unqualified to summarize what the literature states. My standard is what literature the person’s assertions are based on. And as a trained scientist myself (BS in Chemistry), I can attest that Whitaker’s summary of the long-term research is very consistent with my own reading of the literature, which I’ve been studying for many years.
Hope that helps put that question in perspective.
—- Steve
Don’t know why my reply didn’t show up yesterday.
I don’t care at all what the background of the person presenting the research is – there are many non-scientists who are smart enough to put together a summary of the literature created by scientists. Mr. Early’s a good example – I don’t discount his views because he’s not a scientist per se.
What does matter is the actual content of the scientific reference material the author uses to support his/her argument. Does s/he include and address references that speak against his/her hypothesis and explain the conflicts? Does s/he use only one or two references or rely on reviews of the literature over time? Does s/he have a conflict of interest? Does s/he leave out or minimize important facts that may make his/her theory look bad? Does s/he rely on “clinical consensus” or “Key opinion leaders” rather than actual scientific data?
There are some prominent and credentialed scientists who have created fiascos by choosing to publish biased information. Joseph Biedermann almost singlehandedly created an epidemic of Bipolar Disorder in children by arbitrarily re-defining the criteria. He was later severely castigated for his scientific dishonesty and links to drug company payola, and his theories were observed not to predict kids developing adult bipolar with any accuracy (hence the new “Temper Dysregulation Disorder” in the DSM 5).
So being a scientist doesn’t guarantee reliability at all. You have to read the underlying research basis. As a scientist by training (BS in Chemistry), I have read plenty of the research that Whitaker quotes, and have looked for conflicting research, and I’m convinced that his version of reality is much closer to the truth than the “chemical imbalance of the brain” concept that is sold by most psychiatrists. Human beings are all unique and should not be treated based on arbitrary labels. I know based on your other posts that you agree with me there. Clients should be told the truth and given all available treatment options, including non-pharmacological ones, especially when it is becoming more and more apparent that the pharmacological fix is often temporary at best, and has devastating long-term health impacts. If up to half of the people treated could avoid long-term use of APs, we ought to be trying to do that. If it takes a journalist to make that point, because the scientists are too frightened or invested in the current system to make the point, I don’t see that as a reason not to read and respond to the research Whitaker has worked so hard to assemble for us to consider.
“We each have to find our own path to recovery.”So true. And for many, like my son, that path MUST include meds. Our story is like yours, except for the fact that Ben has not progressed to the point where he wants to participate in the consumer movement. I have wished, in the past, that he would tell his story and inspire others; I had hoped he would get involved with NAMI. But I see, from your letter, that that could be dangerous as well. I want him to have peers; but I want peers who will not advise him to stop taking meds. There has too much heartbreak in the past when he has tried.
Thank you for sharing your story. I will hold your son and family in my heart and prayers.
Randye Kaye
author, “Ben Behind His Voices: One Family’s Journey from the Chaos of Schzophrenia to Hope”
Hello my name is Kat. I am Schizoaffective. I also have Multiple Personalities and Bipolar. I was diagnosed in 2002. Looking back on my childhood I was probably born this way. Not many knew about my illness back in the 70’s and 80’s when I grew up. I was abused as a child severely. I won’t go into details. I was an alcoholic and I too saw things and heard voices. I ran away once but didn’t stay gone long. I am on some pretty high doses of medication to just be able to function day to day. I am someone who takes my meds religiously. I do not like how I am without them. I struggle daily. I go to therapy. I went to college to become a illustrator but due to medical reasons I didn’t get to finish. I am on disability and I do work on artwork. I read and have other hobbies. I got married in 2009 to a wonderful man who accepts me, all of me, for what I am and supports me in whatever I do. As long as I stay on my meds I am able to function as well as can be expected for someone with my problems. Life has not been easy but life is never easy or fair. It is full of struggles. I wish I was like everyone else. To be able to hold a job but my mind and my anger issues won’t allow me to work in public so I do art to express how I feel. I tell people about my problems if I think they need to be told. I am currently working on a book about my experiences. My only hope was medicine. Without it I am in such pain and madness. Thank You for listening. Sorry if I rambled.
I do agree with Pete that Whitaker is entitled to his opinion. I also agree that Whitaker is not directly culpable for what happened. What I DON’T get is why Whitaker was invited by NAMI to this thing in the first place. The MI stands for mental illness. Whitaker doesn’t believe in MI and has expressly said so. Was NAMI’s BoD smoking crack when they sent out invites?
– John
Why does Whitaker make it sound as though your choice is to taper off meds or go of them suddenly? I tried no meds for 37 years and then meds for 25 years. I much prefer meds and stability and do not intend to go off them, by tapering or suddenly, unless I am forced to. He says that 50% could benefit by going off meds–does he not realize that 100% have already tried the no meds route? Surely, if people want to go off meds for a medical reason they should, but it is unconscionable to encourage those who are doing well on meds but whose minds are not right and believe that meds are not good for them to stop taking them. This is taking advantage of a person’s illness to further your theories.
He never has said that people who are doing well and are happy on their meds should taper off or go ff suddenly. Lots of people are not doing well of and are not happy with their meds. Some of their symptoms may be minimized, but they can’t work, become physically unhealthy, and lose meaningful relationships. Bad outcomes happen for people who do not take meds too. All he says is that folks who are least exposed to meds tend to have the best functional outcomes.
He doesn’t say that 50% could do well without medication – the SCIENTIFIC RESEARCH says that. And he has never encouraged people doing well on meds to get off. He is really talking less to clients than he is to the system – trying to point out that their treatment plan doesn’t work for a lot of their clients whom they are supposedly helping.
You seem to have difficulty separating your own observations of your own situation from general observations of treatment success over hundreds or thousands of patients over time. What is so threatening about the idea that some people might be able to do well without medication? There are now two major recent studies saying that they can. There are the WHO studies saying that people with schizophrenia diagnoses in India and Brazil do better than those in the USA and the UK. There are alternative approaches like Open Dialog which have shown much better success rates than standard treatment. Why should people not know these things, just because it makes you personally uncomfortable? And why does it make you so uncomfortable? If 50% of those prescribed long-term antipsychotics can function as well or better without them, do you really think we should force them to continue, just because we’re worried that someone might try going off and be unsuccessful at it?
I read the other day that 70-80% of clients are “noncompliant” with their antipsychotic treatment. This number is way too large to be explained by “anosognosia.” In my experience most of those people stop because either the drugs don’t work for them or because the side effects are intolerable. a 70-80% noncompliance rate suggests a treatment strategy that isn’t working for a lot of people. Why not explore alternatives, especially when there is scientific data saying that many people will be better off using the alternatives in the long run?
It’s not a black and white issue: “drugs are good” or “drugs are bad.” If you feel they’re helping, by all means, use them! But that doesn’t mean everyone else has your same experience. I think folks deserve to know the truth so they can make informed decisions. Do you disagree with that idea?
I’ve read Whitaker’s work, I’ve read Torrey, I’ve read Jaffe and Seikkula and countless others. I also have an adult child with mental illness and I’ve known the heartache of not knowing where they are, whether they are safe, watching from the sidelines as their lives derail, etc.
The fact of the matter is that different approaches work for different people and Whitaker is not to be blamed for the fact that psychiatric medications and treatments also have a history of harm or that some people are able to function well without them. While I sympathise greatly with the harsh reality of what your family and son has been through, I also feel for the mother I spoke with whose son died as a direct result of his treatment. She hadn’t known that was a risk and had encouraged her son to take the medications. She was later outraged and heartbroken to discover there were so many potential risks neither she or her son had been informed of nor of alternate treatment approaches.
I sincerely hope you find your son; I sincerely hope he returns to the forms of treatment that were producing benefit for him; I sincerely hope he is able to incorporate other treatments and approaches that might help him reduce as much as possible, maybe even eliminate, any medications he is on (while maintaining function); I sincerely hope he is able to reduce or eliminate his use of marijuana which is such a troublesome trigger for many young people even as many others seem to remain immune. This played a significant role in my own child’s introduction to mental illness and I assure you, there were times I felt angry at anyone who told them that smoking dope was natural and wouldn’t hurt them. It wasn’t true for them.
Successful treatment has to be tailored to the individual person and each person needs to find what does or doesn’t work for them. I appreciate Whitaker’s voice but I am sorry to know that your family has been through so much turmoil in your efforts to find the treatment that works best for you.