WE’VE LOST ALL HOPE: ERIKA Offers A Consumer’s Viewpoint To Parents

On this final day of our week-long series, we hear from Erika, a college student and consumer who writes frequently about mental health issues.

Dear Pete,

We have tried to get our son professional help. I think he has bipolar disorder, although he possibly could have schizophrenia. We know he has an alcohol addiction. He has not cooperated with hardly anything, and we’ve been unable to get him to go to our local mental health center, although officials there said he is eligible for treatment. 

We feel like our hands our tied. The few times that we’ve gotten him to a psychiatrist, our son denies that he is sick, won’t take his medicine, and is extremely hostile to doctors for the short time he’s being seen by them. We’ve had him in our house for several months with his erratic moods and high level of anger. Yesterday he asked to go to a homeless shelter and he is now on the streets. If we try to visit him, he runs away.

His dad and I are at the point where we feel resigned that there is no hope nor help for our son. The system has worked against us at every turn … and he needs help. People have recommended “he needs to hit rock bottom” and that we need to wait for him to *want* help. We simply don’t know what to do. Do we wait for him to hit rock bottom on the streets where we know he is not safe?

In our view, the mental health network has been ineffective at best, and is rolling the dice with people’s lives. Now we can see how barriers in the mental illness system keep people from receiving basic services. This has been hell for his dad and me, and I’m sure worse for our son.

If you have any advice please let us know.  A concerned parent.

Dear Concerned Parent,

As a person with mental illness, I read your letter through the particular lens of someone who has tread through life in shoes that are similar to the ones your son is wearing now. I read it as someone who understands the fear and confusion that one experiences when trapped in the grips of a mind that somewhere, somehow, has had its wiring go astray. I read it as someone who is painfully familiar with the isolation that one feels when nobody seems to understand them, their reality and/or what they are going through. I read it as someone who watched hir parents struggle to respond to and empathize with a child that had changed so drastically and who seemed to be, on many occasions, simply unreachable. And I read it as someone who, in the midst of my darkest moments, has desperately wished that those around me could understand what I was going through and help me navigate my way out of the nightmare I had awoken into.

Thus, while I am not qualified to offer medical or psychological advice [as a professional could], nor do I have the experience to offer tidbits of wisdom on how to cope with and adjust to your new reality [as another parent, such as Pete or Chrisa, could], I can provide you an insight as to what it is like to experience mental illness, what actions and inactions I wish my family and friends would have taken in their attempts to help me and, hopefully, show you that there is a future — for both yourselves and your son — that is worth fighting for.

Before I continue, I do want to reiterate the fact that I am not a professional and, as a consequence, I cannot advise you as to what medical approach would best allow your son to attain and maintain stability. Only a physician or other mental health professional who has personally spoken to and assessed him can do that. Likewise, as each situation is different, I cannot claim to know with certainty what course of action you should take and, most importantly, I cannot claim to speak for your son. As, though I am hopeful my own experiences and the insight gained from them can aid you both as you learn to navigate this often winding road, even in the shared experience of mental illness, individual complexities and flavors still hold a strong presence. Just as your son is uniquely his own person, his illness, its manifestation, the course it takes and his response to it will ultimately be uniquely his own, as well. As such, remember that while the advice that I and the other contributors provide may be helpful, it is still only a framework. At the end of the day, with the support of both those closest to you and those in the larger mental health community, you will all have to design your own way of dealing with this psychiatric beast — one that works best for you and your family’s particular needs.

All of that being said, let me begin by stating something of which I am fairly confident: your son, on some level or another, is scared, confused and hurting. Either it be due to the effects of a mood disorder, psychosis, his alcoholism or any combination thereof, he is experiencing, from your own account, significant mood swings, outburst of rage, compulsive alcohol use and likely a constellation of other experiences that a typical life does not, and cannot, prepare one for. Experiences that the majority do not share; experiences that “other” him; and experiences that, in his perception, likely leave him alone in what he is feeling. Experiences that likely make him feel out of control — perhaps, one of the worst emotions for many of us to endure — of his own thoughts, feelings and actions. If he is experiencing any psychosis, these are experiences that trick his senses and instincts into telling him that there is danger where there’s safety and reality where’s there’s none. And what reason would he have to doubt his senses and instincts? You don’t doubt yours. They are experiences that are leading his own parents and various professionals to tell him that he’s sick and needs to take medication with a laundry list of distressing side effects. When I was in his shoes, pre-diagnosis and pre-treatment, I know that I felt as if everyone was working against me. I felt as if I was the only one in the world to understand what that torment felt like; or, at the very least, I knew that nobody who claimed to be there to help me understood. I felt ambushed by demands and concern from those around me that, while meant to aid me, only served to further overwhelm me; they became just another pressure, another screeching noise, to add to the sensory and psychological overload I was experiencing. They were perceived as attacks, rather than loving attempts to reach me.

At that time, all I wanted was to feel as if there was someone on my side: someone who was willing to just sit with with me and hold my hand as the night threatened to overtake me. I was fighting every moment, every second, to battle back the demons in my mind and hold it together. I couldn’t tolerate discussions of illness, of sensory deception, of the right or wrong thing to do. I couldn’t handle demands, or pleas, no matter how well intentioned. When people attempted to have those discussions with me, I lashed back out at them. Not because I intended to harm or did not wish to feel better; but because I was in survival mode, fight or flight, and my heightened senses perceived anything that challenged my fragile sense of self and world concept, and the slim amount of stability I was able to hold onto, as a threat. In addition, I could hear the panic, the hurt and the desperation in the voices of those who begged to know what was going on or who pleaded with me to engage in treatment and, though I realize those are all valid emotional responses, they made me feel more panicked than I already was and frequently racked me with guilt and shame — emotions that just drove me further into myself. Instead of “Do X” or “Please do X”or “You need to or should do X”, what I really craved to hear was, “While I know I can’t understand what you’re going through, it’s clear that you’re in a lot of pain. If there’s anything I can do — either that be provide an ear, a favorite meal, or X — let me know. I love you.” No pleading, no demanding, no begging, no arguing and no confrontation; just compassion.

As a consequence of that experience, it is my inclination to advise you that telling your son you think he is sick and needs to get help likely isn’t doing him, you, or your relationship any good. While I understand it is coming from a place of love and a desperate desire to see him happy and healthy, all it is likely doing is putting him further on the defensive and driving a larger wedge between you two. I promise you, by now he knows how you feel about his behavior, his emotional state and his drinking and he knows what you think he should do about it. There’s no need to continue telling him what you think about it. Most certainly, don’t lie to him and act like you think there is nothing wrong; but continually arguing about it is likely just exhausting you both and, quite honestly, isn’t going to help you help him. Think about it from his perspective: if the first (or main) thing someone concerned about you was doing was telling you that your experience of the world was wrong, that theirs was right and that you needed to do things their way, would you be receptive to them? I doubt it. While I know that this is likely supremely easier said than done, you need to remember — and respect — that the reasons people deny both a problem and treatment are complex – – far more complex than a simple neurological abnormality — and that, eventually, when he feels a little less scared and a little less alone, he is likely to come to see that what he’s currently doing isn’t working and make strides, and blunders, in figuring out what does.

In the meantime, focus on what you can do — and what you can be for — your son right now, in the present. Reach out to him and let him know, up front, that you’re not going to argue with him or tell him what you think he should do anymore. Tell him that you know he’s going through a lot and that he likely feels pretty overwhelmed. Ask him what he needs and express a commitment to helping him get that, either that be a listening ear, food, toiletries, medical care, an item of significance that he left at home and what have you. Inquire as to how he’s feeling. Show an interest in what he’s doing: how does he spend his days? Meet any interesting people? Offer to take him out to dinner or lunch sometime. Drop him off a care package of simple things you know will make his day-to-day life more comfortable and maybe even put a smile on his face. Above all, remind him that you love him and are there for him. If he won’t meet with you face-to-face so you can say and give him these things, write it in a letter or, if you had noticed before he left that he seemed to have trouble sitting still, consider recording it on a device you can easily give him. While it may take awhile, and he may push back initially, this should make it easier for him to lower his defenses and, consequently, open himself back up to you. I know that it’s what it would have done for me.

Once a relationship has been reestablished, you need to make yourself aware of as many opportunities to help him as possible. For example, if he expresses a sense of isolation or of feeling alone, let him know that there are others who feel the same and then hand him the information for a support group. If he expresses feeling sad or distressed, let him know that talking to someone can help and ask if he’d be willing to see a mental health professional (do not say it’s because he is sick — but because it can help him cope with everything he’s dealing with); if he is, that can be a great first link to further help, particularly if said counselor is on board with dropping the offensive. Comments such as this are particularly effective if you yourself reach out to a support group or counseling professional to help cope with everything that’s going on and, therefore, can tell him that you’ve done it, too. If he expresses that he’s tired of living in a shelter or that he wants a job or wants something that would require a job to pay for it or so forth, try to help him figure out why it’s so difficult for him to do those things. And so forth. Every now and then, you can bring up the idea of seeking treatment, but make sure to frame it in a way that shows him how it benefits him (ie, if you get care, you can do X or maybe not feel like Y, or it would help you achieve Z) and do not aggressively pursue it. Hopefully, little by little, as the defense dissipate, he’ll open up more to the conversations he once shut out and, with it, the idea of psychiatric treatment. In the meantime, interacting with him this way will keep you in contact with him and ensure that, no matter what happens, he has someone he feels he can go to.

Many times throughout this nightmare, you may wish that you could just force him to take his medication or feel tempted to attempt to get him into the nearest hospital, no matter what it takes. I ask you to refrain from this, no matter what your state law may allow, unless you truly feel that he is an imminent danger to himself and/or those around him. While in said cases of dangerousness involuntary care can be the difference between life and death and have a positive impact on one’s life, it also poses the very real risk that he will just be left feeling powerless, resentful and defensive and respond to that by invoking the one power play he has over you — the one way he can regain his feelings of having power and being in control of his own life: contact (or, rather, stopping it). It also removes his right to decide what he does with his own body and, though it may benefit his mental health in the long run, that removal is acutely felt. As such, it is something I can only recommend doing when there is absolutely no other option.

To conclude, I would like to share with you the current ending to my own battle with mental illness. After years of severe instability — in which I experienced psychosis, mania, severe depression, suicidal ideation, recurrent hospitalization, and impulsive, self-destructive behavior — I am now mostly stable and enrolled in — and doing well in — college. I am making plans for job and career. I have a wonderful group of friends, hobbies, and a sharp sense of independence. While I still have moments in which the illness rears its head, and am subject to the same violate ups and downs as every person, I can truthfully say that, more times than not, I am a happy, well-adjusted human being. While I the road to get here was paved with fire, there were moments in which I could not see myself surviving another year and faced more setbacks than I thought I could bear, I can also say that it was worth it. If you take anything away from this, it is to please, please don’t lose hope. There is a future out there for all of you — you just need to be willing to hang in there until it comes.

— Erika

Erika is a consumer and college student who eventually hopes to work as a mental health professional. She currently does volunteer work for a variety of mental health organizations. Besides feeling passionately about mental health issues, she is an animal/cat lover and never seen without her owl hat. She first gained attention when she wrote a post for The Mindstorm in response to a Wisconsin high school administrator who supported a dance team that stigmatized persons with mental illness.  When asked how she got so wise at a young age, Erika quipped: “While I would like to think it was the owl hat, it was more likely out of necessity.”