In a blog that I originally published on March 12, 2010, I tried to explain why my son resisted taking medication for several years after his first break. The question that I posed nearly three years ago is still the one that I am asked the most today. Here’s what I wrote back then. I’d love to hear your thoughts today.
March 12, 2010
“Why won’t you just take your medication? I take pills for my cholesterol every night and its no big deal?”
“Every psychiatrist we’ve seen has said you have a mental illness. Why won’t you accept it? Why would the doctors tell you that you’re sick, if it weren’t true?”
“Let’s look at when you were doing well and when you got into trouble. What was the difference? Medication. It was the difference. When you were on your meds, you were fine. And when you weren’t, you got into trouble. Can’t you see that?”
These quotes may sound familiar to you if you are a parent and have a a son or daughter with a severe mental illness. I’ve said everyone of them to my son, Mike.
It often is frustrating for us – parents — to understand why our adult children will not take anti-psychotic medication or take it only until they get better and then stop. The remedy seems so clear-cut to us, so simple – and watching them experience the mania, depression, and delusions that happen when they become psychotic is heartbreaking and horrific.
Early on, I tried every trick out there to get Mike to take his pills. Those of you who have read my book know that during one of his first breakdowns, I crushed his pills and mixed them into his breakfast cereal only to be caught by him. I snuck into his room and counted his pills too one day and when I discovered that he had stopped taking them, I followed the advice of a therapist who had told me that I needed to practice “tough love.” I told Mike that if he didn’t take his medication, he had to move out of my house. He did – that very same day.
Another time, I offered to pay him to take his medication — a $1 per pill.
It was my friend, Xavier Amador, author of the book, “I’m Not Sick, I Don’t Need Help” who finally convinced me to back off. “I can promise you, Pete,” he said, “your son knows exactly how you feel about medication. You don’t need to ever mention it to him again.”
And since that day, I haven’t. Not a word.
So why do persons with mental illnesses refuse to take their medication or stop taking them as soon as they become stable?
I am asked that question more than any other after I give a speech.
Let’s skip the obvious reasons –that some anti-psychotic medications can dull a person, make them feel physically lousy, kill their sex drive, cause them to gain weight or send them to bed exhausted even though they are already sleeping for 16 hours a day. Let’s ignore the fact that no one really knows the long term health impact that medication can cause on a person’s body.
Instead, let’s dig deeper.
One day, I asked Mike to explain to me in writing why he had struggled so much when it came to taking his medication.
Denial was a strong factor in my understanding and even when evidence of my own madness would be presented, my mind would find a way to weave out of the circumstance and an obtuse reasoning would somehow form that would keep my own pride intact. Always two steps ahead of the truth, my brain would tapdance its way into a room where I was not at fault, where it was everybody else versus me, where I was some sort of prophet or special medium who was undergoing visions, not hallucinations, and I was important, not a victim.
It is very hard to understand that one’s own credibility is broken. There is a lot of personal shame one undergoes when they realize that they are no longer in line with society’s understanding of sane. It makes one doubt one’s own instincts and second guess the movements and decisions that one makes. Suddenly, the veil of confidence and ability has been lifted and one is a wreck, struggling to piece together the remnants of what are left of one’s self image.
I learn a lot from my son. One lesson he has taught me is that taking anti-psychotic medication is much more complicated than being told by your doctor that you have high cholesterol.
*****
Here is a sample of what you missed if you are not following me on twitter. A tweet from this past week:
@peteearley: Glenn Close was fabulous on the Today Show #mental health http://video.today.msnbc.msn.com/today/50085896%2350085896%20%E2%80%A6#50085896
About the author:
Today I took my parent to the doctor to confirm Parkinson’s disease.
The evidence was unmistakeable. My parent insisted the doctor was wrong.
He provided a script for a medication that will improve my parent’s quality of life.
I filled the script and did my best to convince my parent to start taking the medicine. The first pill was taken. My parent firmly believes the diagnosis is wrong. Deja vu. Here we go again. Denial and fear overtake understanding and compliance.
Terri
Thank you for the re-post. It was very helpful to me in that I saw some
parallels with what my son struggles with. Bear with me while I try to get this out. My son suffers from a serious anxiety disorder and depression. He does take his meds. But what he has a hard time sticking with is going to school. It might not sound huge, but for him it is.
When I talk to him we make more progress when he is able to save face; kind
of like what your son wrote about being able to keep his own pride intact. I also see that he really wants to be in charge of trying to resolve his own ssues. He’s very insightful and aware of how he can throw up roadblocks to his
own progress, and he does accept the support, but he has to choose to fix
things; he does not be seen as a victim. He wants to feel important, like your son expressed, and like he matters. When he’s really down and isolating himself, he says he feels like he doesn’t matter to anyone.
Finally, he knows that he causes his family stress and starts to feel bad, or guilty. Your son’s reference to feeling personal shame reminded me of thatI think what I’m trying to get at is that through all of the support meetings and “what can we do to help you get back to school?” meetings with school staff and mom and dad, as long as he isn’t shamed and is able to save face and keep his pride intact, as long as he can take charge of fixing his “stuff” and doesn’t feel like a victim or controlled, he does well.
So, I hope that all makes sense… and thank you, again.
Finally, he knows that he causes his family stress and starts to feel bad, or guilty. Your
son’s reference to feeling personal shame reminded me of thatI think what I’m trying to get at is that through all of the support meetings and “what can we do to help you get back to school?” meetings with school staff and mom and dad, as long as he isn’t shamed and is able to save face and keep his pride intact, as long as he can take charge of fixing his “stuff” and doesn’t feel like a victim or controlled, he does well.
So, I hope that all makes sense… and thank you, again.
Thank you for the re-post. It was very helpful to me in that I saw some
parallels with what my son struggles with. Bear with me while I try to get this out. My son suffers from a serious anxiety disorder
and depression. He does take his meds. But what he has a hard time sticking with is
going to school. It might not sound huge,
but for him it is.
When I talk to him we make more progress when he is able to save face; kind
of like what your son wrote about being able to keep his own pride intact. I also see that he really wants to be in
charge of trying to resolve his own issues.
He’s very insightful and aware of how he can throw up roadblocks to his
own progress, and he does accept the support, but he has to choose to fix
things; he does not be seen as a victim. He wants to feel important, like your son
expressed, and like he matters. When he’s really down and isolating himself, he
says he feels like he doesn’t matter to anyone.
Finally, he knows that he causes his family stress and starts to feel bad, or guilty. Your
son’s reference to feeling personal shame reminded me of thatI think what I’m trying to get at is that through all of the support meetings and “what can we do to help you get back to school?” meetings with school staff and mom and dad, as long as he isn’t shamed and is able to save face and keep his pride intact, as long as he can take charge of fixing his “stuff” and doesn’t feel like a victim or controlled, he does well.
So, I hope that all makes sense… and thank you, again.
Finally, he knows that he causes his family stress and starts to feel bad, or guilty. Your
son’s reference to feeling personal shame reminded me of that
I think what I’m trying to get at is that through all of the support meetings and “what can we do to help you get back to school?” meetings with school staff and mom and dad, as long as he isn’t shamed and is able to save face and keep his pride intact, as long as he can take charge of fixing his “stuff” and doesn’t feel like a victim or controlled, he does well.
So, I hope that all makes sense… and thank you, again.
I printed out Mike’s explanation of not taking his meds when it was first posted and i keep it in my book Crazy. I use it to educate persons on just how difficult it is for males to even grasp the idea that there is something wrong with them. I personally would like to tell Mike that although he is not enlisted in the National Defense System he is a gallant and brave warrior for the work he now does. He has guts most men do not have. I salute!
I get weary when I read that the most common question you
are asked is, “So why do persons with mental illnesses refuse their medication or stop taking as soon as they become stable?” Why do they ask that
question about us as a group? Do people
who ask that question really believe that those who struggle with mental
illness are all the same? That we must think the same things? That if we discontinue or refuse medications
it must be for all the same reasons? Why
do they lump us all together?
Medication non-adherence is common, and not just for those
with severe mental illness. Talk to
family physicians, endocrinologists, and cardiologists who care for people with
other chronic illnesses like diabetes, heart disease, etc. Maybe if parents of adult children with
severe mental illness realized how common this is with patients in general, it
wouldn’t seem so strange or surprising with their own son or daughter. Why
do persons with diabetes not follow their diabetic diet or take their
medications increasing their risks of vision loss, development/worsening of
painful peripheral neuropathy, amputations, or early death? Why are hospitals filled with people who have
had strokes because they did not take their antihypertensive medication as
prescribed or make the lifestyle changes their physicians recommended? Why are
so many people unable to finish a single bottle of antibiotics leading to drug
resistant bacteria? Many can’t even take
antibiotics for 10 days? People with
mental illness are just people. We
refuse medications and discontinue them for a variety of reasons, just like people
with other health conditions do.
In fact, I asked my own psychiatrist if he had ever discontinued a medication early, and he admitted that he had. While it may be important to “dig deeper” with some patients I caution against generalizing about patients with severe mental illnesses. When I was in the hospital I knew of several female patients who were very distressed about the weight gain that had occurred in such a short time while on these meds and planned to discontinue them once discharged. I, too, have discontinued meds in the past due to weight gain, because gaining weight makes me feel even more sluggish and bad about myself. Sometimes you don’t have to dig deeper, sometimes it’s just the side effects.
(my real name is not KristenKringle – I chose it because I thought it sounded festive).
Mike’s explanation of what was going on for him is fantastic! So beautifully written and insightful. I am so grateful that he shared this. Thank you.
My son experienced 2 obvious side effects from 2 of his medications, Abilify caused him to be constipated, so his doctor said it was okay if I gave him an over the counter daily stool softer. His Clonidine caused him to become sleepy, so I gave it to him 30 minutes before bedtime. I taught my son that everyone has something. Some you can see it on the outside and others have it on the inside, some both. Son, everybody has something.