There's been a lot of writing in this corner of the blogosphere about medication compliance versus the anti-psychiatry movement; I want to share my perspective on this. First of all, we are all individuals with varying biochemistry and varying temperaments and what works for one person may or may not work for another. There is no absolute right and absolute wrong here. We each have to find our way through our mental illness and beyond into recovery and, as I've said before, there are over 10 percent of us who don't survive the acute stage or early recovery stage. I don't know the percentages, but there are those of us who don't respond to the anti-psychotic medications or who have such bad side effects that it is nearly impossible to take them. I venture to say that most of us fall into the category of being helped by the medications though not free of all symptoms. And then there are the blessed minority who lose all their symptoms primarily due to taking the medications. I am somewhere in the middle. Most of my delusions and paranoia have gone, but I continue to have voices and bouts of depression and anxiety. I have been taking the medications faithfully for a decade and in the interim I have gotten obese and to a lesser extent sexually dysfunctional. I have told myself that since I am a middle aged woman living alone that these side effects are not too much to bear to have most of my sanity intact. Being fat really does bother me and I still have hopes that I can reduce my weight. I haven't completely given up.
But what if I were a young person? Would it be worth it to put on tons of weight and become somewhat impotent? It all depends on how ill one is. If you are so consumed by delusions and paranoia to the point where you have several psychotic breaks I would say that yes, it is worth it. But it is not that simple. First you have to commit to taking the medication for at least a year, probably making medication adjustments till you find the best combination. These are potent drugs and it takes time to adjust to having them in your system. I would never have entered into the recovery stage if I hadn't had a whole lot of patience while trying to find what worked best for me. After I did find the right combination, I would have years of struggling with depression and later anxiety. I'm not going to kid you, recovery takes years not months, though it seems to me that the earlier you catch it and treat it the better the prognosis is for the long term. That's for those who respond to the medications and the only way you find that out is by consistently taking them over an extended period of time. When I first became acutely ill my psychiatrist gave me a lot of free samples of anti-psychotic medications to try because I didn't have insurance. I had three breakdowns in three and a half years and each time I fell I would try taking some of the medication, but I would always stop after a few weeks or a month. I dabbled in it and that did me no good. If you're going to do, do it, commit to it, test it out, see which medications reduce your symptoms the best.
There are several reasons why I am faithful to taking the medications despite the side effects. The most basic motivation for me is fear. Only those who have crossed over repeatedly into insanity know how disorienting and frightening it is to lose one's mind amidst the onslaught of psychotic thoughts and feelings. While I was in it I really felt as if I were being psychically crucified. I was figuratively lost at sea with no sign of help on the way. I was in so much pain. I lived in a twilight zone with maybe one foot tentatively in reality and the rest of me consumed by illusions. I was battered by repeated breakdowns and the further along I went in that direction, the closer I got to yearning for death. The medications gave me an opening, a window away from death and back towards life. I took that chance. I compromised. I knew one thing clearly, I never wanted to return to a life of acute psychosis and I was willing to go the distance. I'm here to tell you that I am so glad that I did. My life is not perfect, but it is solidly good. I am grateful to be alive, even when I'm suffering. I no longer feel as if I'm on trial waiting for the jury to come back with their decision -- life in hell or a second chance at becoming a better human being with the odds tipping against me. The medication is part of why I have beat the odds.
Another reason why I take the medications is to reassure not only myself, but my loved ones and society at large that I am doing everything possible to treat my illness. I see it as accepting responsibility for myself and taking care of myself. I also see myself trying to set a good example for those who are in the acute stage of psychosis to at least give the medication a try. If you are one of the ones who does respond to medication, it gives you a choice of something that might help you to avoid suicide. I hate to say it so plainly, but it is a hard, cold fact, if you develop schizophrenia it is going to become acute, a trial by fire, in which things will eventually come down to life or death if gone untreated. It is those lost souls that I am most concerned about.
But what of those people who don't respond to the medications or who have way too serious side effects, what are they to do? Before I began taking the medications I found a therapist and saw her once a week and I went to the only support groups available for mental health in my community: Al-Anon and a domestic violence support group (I had lived with an abusive alcoholic for over five years...). My voices were both positive and very negative, angels and devils and sometimes angelic devils and devilish angels. I don't know how to explain it but they tormented me into reaching out to help others. They said I had to "be of benefit to my community". It was their idea, both the good and the bad voices, that I seek out a therapist, that I check myself into a hospital for an overnight stay so that I could get my diagnosis, that I go to support group meetings and actively try to help the people (mostly women) I met there, all while I was floridly psychotic. What I really wanted to do was to go hide in a hole somewhere and try to survive the storm, but the voices absolutely forbade it and threatened permanent hell if I tried to avoid being responsible to myself and others. I was required to pray for everyone in my support groups, required to make frequent calls to them to see how they were doing and to generally go out of my way to help others when I was in such desperate need of help myself. I didn't tell almost anyone that I suffered from schizophrenia because I was still in denial about it. So though I was busy helping other people, I was at the same time very isolated, living in that twilight zone and only talking to my therapist once a week. What I really needed was to be surrounded by my peers, especially those in recovery.
If you have decided not to take the medications or they don't work for you, you must have a support system in place. Actually that goes for people who take the medications as well. Isolation is so tempting and I understand that some of that is necessary to reduce stress, but connecting with others who are in the same boat as you is the light at the end of the tunnel. For me, the connection has been nearly entirely online because my community has not organized mental health support groups yet. So far, this online presence alone has been able to sustain me, though I really believe that face to face meetings work to lessen the sense of isolation and to connect people within their communities. It's one thing to contact someone online for support and quite another to call someone in your community and possibly see that person and interact with him or her. Really both online and offline support are very important. The more avenues are open for communication, the better you will feel. This goes for individual therapy as well. Talk therapy is known to work to alleviate symptoms. So talk to your therapist, talk in your support group or at your club house, talk online and talk to yourself, too. For me talking to myself took the forms of keeping a written and an audiotape journal. The audio journal I began after I was firmly into recovery. I'm not sure what it would be like during the acute stage of psychosis. It might be disturbing, but then again it might be helpful to track the comings and goings of your symptoms. I see it as a tool to develop further insight into myself and my illness.
Therapy, support groups and journaling as well as a dedication to one or more forms of creative activity (art, music, writing, etc...) give some guidance and direction and a release from the stress of holding one's psychosis inside. My therapist taught me to objectify my illness, to see it as separate and distinct from myself. If she hadn't helped me with that I might have internalized all that negativity and wound up feeling like some kind of monster. Instead I believed in my basic goodness. I was an ill person, not a bad person. Adopting a Buddhist practice has gotten me to not only be very honest with myself, but has given me the tools to look at my mind with some discrimination. Think of yourself as a compassionate and artistic scientist. Study yourself. I do think it is possible to overcome the trappings of psychosis without medication, but it would take great courage and discipline and support. During the three and a half years that I was unmedicated I couldn't pull it off. I broke down. I had only partial insight and no support group. It was all very new to me then and my main delusion colored my world; I lived inside of it. I am not ashamed to say that my illness overwhelmed me to the point where I began to take the anti-psychotic medications. There should be no shame in taking the medications if you need the help. That's one area where I'm at odds with the anti-psychiatry people. If they want to go cold turkey with their illness, that is their right, but they should not attack those that do take the medications. Some of us really need the help. For some, our lives depends upon it. There is enough stigma attached to mental illness without adding more into the mix.
I wish I had more to offer those of you who are sitting on the fence about whether to take the medications or not. I only know what I know from my experience first without medication and then with medication. I have not yet tried to reduce my medications or go off them completely. Maybe someday I will try too, but if I do I will be prepared to the hilt. So if you are unmedicated or going off your meds, have a plan of action. Really think it through and never give up on yourself.
A Recovery Blog
This blog is about my continuing recovery from severe mental illness. I celebrate this recovery by continuing to write, by sharing my music and artwork and by exploring Buddhist ideas and concepts. I claim that the yin/yang symbol is representative of all of us because I have found that even in the midst of acute psychosis there is still sense, method and even a kind of balance. We are more resilient than we think. We can cross beyond the edge of the sane world and return to tell the tale. A deeper kind of balance takes hold when we get honest, when we reach out for help, when we tell our stories.