A Story of (Lack of) Self-Determination

Recently, I was at a forum hosted by the Alliance for Rights and Recovery, which led me to assess my satisfaction or dissatisfaction with the mental health system. It was not very positive. For the purposes of this essay, I am going to focus on person-centeredness and who gets to make the decisions.

At first, I pinned my problems on the court system. But the more I thought about it, the more it seemed truly systemic. The first time I went to the hospital, they came to my room and said, “Hi! We have something for you! It’s for clear thinking!” I thought it was some kind of reward, not medication. No one told me about what medication they were planning (Risperdal). Neither did they go over the potential side effects with me before making me take it. When I saw the doctor later, I asked whether the medications were “addictive” (not being a doctor and not knowing quite how to express myself). What I meant was whether my body would become dependent on the medication and whether I would be able to get off later, without any problem. But since I asked about “addiction,” the doctor just said no, it was not addictive. I felt misled. That hospitalization ended with a diagnosis of depression.

I read on the Internet that it takes months for the medications to have the intended effect. So after six months, I decided that it wasn’t worth it and got off on my own. It was difficult and involved feeling woozy and throwing up. That’s when they started using the (somewhat presumptuous) label on me, “Non-compliant.”

The next time I wound up in the hospital, I had been “hearing voices.” I don’t really believe it was a crisis. Looking back, I question whether I should have been taken to the hospital at all. I think a referral to a private psychiatrist or to the partial program might have been more appropriate.

When they were supposed to take me from the ER to the psych hospital, I told them I would rather go to jail. They told me, “This is America and we don’t just put people in jail.” We just put people in worse-than-jail. But I thought the hospitals were safe, at least. After hearing of someone who died of choking in a psych hospital, however, it makes me question that assumption also.

In any case, when I was taken to the hospital and wanted to refuse my meds, people kept telling me “There’s no way you’ll win in court.” But I felt like I had to try. My diagnosis was schizoaffective disorder. I thought I had an airtight case because I had tried medications in the past and had experienced actual side effects. In addition to just not feeling good, I lost my period which put me at risk for osteoporosis, and I was also worried about the diabetes risk. My primary care physician suggested taking additional calcium and vitamin D, but it was a cumbersome solution to what shouldn’t have been a problem (in my view).

I lost my case in court, of course. The doctors wanted to try different medications and they also brought up a factoid — that I had been seen carrying a knife in my apartment building. “Wielding a knife,” they said, but really more like “carrying” (for self-defense).

At the end of the day, the doctors didn’t even follow what they had proposed in court. The paperwork they filed with the court said that they were only going to try up to 20 mg of Zyprexa, and then move on to the next medication Haldol. The doctor informed me that Haldol had much worse side effects, and he would like to go up to 30 mg of Zyprexa, to alleviate my “suffering.” In truth, there wasn’t much “suffering.” I had strange beliefs, such as my thoughts being manipulated by a satellite, and some of my beliefs have proven to be clearly wrong, but it was more “weird” than “suffering.” I felt like he was just trying to get me to shut up. Maybe it’s a case where being educated is not an advantage. (I have degrees from Stanford and MIT.)

When I left the hospital, I had to go to court again, for them to order me to stay on my meds: AOT (Assisted Outpatient Treatment). I fought it, but lost again. They put me on an ACT team (Assertive Community Treatment). The members of the team rotate and try to see you once a week, either at your residence or “in the community” (e.g., Dunkin Donuts). This was supposed to be a big win because I had limited transportation. But they never know when they are going to be in your area. So they typically call you the day of and say, “We’re going to be near your apartment today — do you want to meet?” Massively inconvenient. I specifically asked them to tell me the day before, but they couldn’t do it.

I now know that ACT teams are stretched to the limit with demand. When I called one for information for a resource list, they just said, “We’re an ACT team, and we’re too busy to talk to you.” I don’t know what the solution is to that (other than doubling the number of ACT teams).

The 30 mg of Zyprexa proved to be too much. I am not a very big person, so the high dosage affected me quite a bit. I went to the hospital to interview for a program (PROS: Personalized Recovery Oriented Services). My brother took me there and we were walk-ins so we stayed pretty late, hoping to get to see somebody. At around 11 pm, we had the interview. The worker who interviewed us sensed that things were not right — that I was over-medicated and needed to be admitted to the hospital (right then) to reduce the meds. So again, I was just yanked out of my daily life. Even that reduction wasn’t enough, though. After another couple months or so, I just couldn’t take the meds anymore, and I got off on my own again.

I went through the whole thing one more time. By then, AOT had changed from six months to one year. So my body was even more dependent on the medication. Somehow, maybe the combination was better the third time around and I stayed with it without being completely miserable. I kept asking my psychiatrist to reduce my meds, but she was reluctant, arguing that I was at “just the right” dosage. Cynically, I think this is a question of job security. If they take everyone off meds at the earliest opportunity, who will they have left? Also, a doctor who is a co-worker at my agency seemed to think I could get off within two months, and he had no vested interest in my staying on them. (I work for a mental health agency.)

One thing that gave me pause was that I know someone who was seriously intent on getting off his meds (he had it written into his treatment plan), but he ended up dying of suicide. I heard this through the grapevine, so I don’t know any details. But it felt like a cautionary tale.

I finally saw some movement on reducing the dosage when I spoke to the Service Director about possibly changing doctors or leaving the clinic. I got down to 10 mg of Zyprexa. Then my psychiatrist retired! I had a temporary psychiatrist for around six months, and then I got a new psychiatrist. Then after only two meetings, I heard that they had ended his contract. So I am starting over with yet another new psychiatrist. This has been very disruptive to my hopes for a reduction in dosage.

Meanwhile, I was questioning the value of my therapist. When you’re unemployed and have nothing to do, the therapist is great. But once you have a job, I think their usefulness diminishes. After careful consideration, I called the Service Director (a new person — more turnover). She said therapy was required at the clinic and to try to hang on for two more months to see if I really needed a change. I had been “hanging on” already, but I agreed. Then something convoluted happened. My therapist told me to call another clinic to see if they could do an intake. At that point, I wanted to stay at the same clinic and didn’t even want a therapist. In particular, I wanted to see what the new psychiatrist would be like and I wasn’t that anxious to go through another intake, learn new procedures, etc.

So, in any case, I don’t know if I could have been convinced to take the meds without coercion. The hearing voices and conspiracy theories were definitely bothersome. However, they did not prevent me from paying my bills or doing anything essential. In a parallel universe, I might have tried clozapine, which I hear is kind of a miracle drug, but requires constant monitoring, because of the white blood cell counts. There could be a deadly infection.

I think the judges need to consider that their decisions may affect people for years to come, not just in the hospital. One thing I have heard that is hopeful is about INSET (Intensive and Sustained Engagement Teams). I think people are looking at them as possible alternatives to court-ordered mandates. It’s a little confusing because a court order is one way you can become eligible for INSET. But it sounds like there are other criteria also. I wonder what my life might have been like with the engagement of a peer. Right now, I have a “Compeer” who is a volunteer without mental health issues, who helps me feel less isolated. I feel like she has become a good friend.

In the peer training class (to become a peer specialist), we learned that full recovery from mental health issues like schizophrenia and depression is common — it just takes years/decades? It has been around 15 years for me.

On a somewhat positive note, the peer training class was definitely a turning point in my recovery. It made me feel that my perspective was not an aberration, but was valuable. It was the antidote to isolation and stigma. It is a shame that people with mental health issues are often excluded from community life due to issues such as transportation. For example, I take ParaTransit, but I frequently have to wait for as much as an hour for my ride to arrive. If it is not in the county, and/or if I have the money, I will take a cab. The peer training class eventually led to my current job administratively working with peers, and being surrounded by people who understand mental health with lived experience is a huge benefit.

Even geriatric patients who have limited cognitive abilities have the right to make their own health care decisions. Why should mental health patients have less?