I’ve been on disability for about 5 years now. I started taking meds on a permanent basis in 1992. In spite of being heavily drugged I maintained a job in social work, most ironically, in mental health helping people like me. I didn’t feel so terribly different from my clients. I often felt like I was faking it and found I often wanted to tell them my diagnosis, in other words tell them “I really DO understand.” I think they intuitively knew I understood. I often volunteered to take the most “difficult” clients because I was able to have more compassion for them then many of my colleagues who spoke disrespectfully about so many of these people.
Though working through the haze in my brain was extremely difficult and I did miss a lot of days of work and occasionally took up to three months of temporary disability, the work gave me a sense of purpose and vocation. I was proud of what I did.
I believe it was my slow deterioration brought about by the use of drugs, the slow poisoning of my body and mind which ultimately brought me to my knees and left me disabled. In the end I was unable to tolerate the stress of work. I always loved my clients. They never caused me problems…it was the bureaucracy and paperwork that finally finished me. My last job, which I got after moving away from a job I really loved, had so much demanding paperwork that I actually spent more than 50% of my time at it. It is a tragedy of our mental health systems in general that the clients are not the priority. Pushing the papers, that will in turn bring in the money, is the priority. This paperwork was so demanding–I had to keep track of dozens of codes and use just the right wording. I couldn’t keep up. My cognition was simply too impaired. I made hundreds of mistakes and did not get properly reimbursed for the little time I spent with clients. My employers were not unkind, they knew I was good with the clients, but I was not making the grade as far as paper work and reimbursement went. The anxiety started to mount. I went from 3 mg of Klonopin a day to 6 mg a day, in addition to the myriad of other drugs I was on. (11 mg of Risperdal, 50 mg of Seroquel, 400 mg Lamictal, 200 mg of Zoloft). My psychiatrist told me not to worry about it. I was concerned–though I didn’t at that point think too much about the overkill of the other drugs I was on, I was aware that Klonopin was addictive. I didn’t know that ALL the medication I was on was addicting and causing deterioration! In any case, I started to have a melt down.
In retrospect, knowing what I know now, it’s clear to me that the drugs were what made me deteriorate. Benzodiazepines alone, often prescribed to people with simple sleep problems, slowly make one less and less able to cope. I now know that all these drugs cause progressive deterioration of cognitive functioning and ability to cope with stress. I was on more medication than any client I ever encountered…including those labeled with severe and persistently mentally ill.
I had a mild, but very troubling manic episode as a result of the high anxiety. Whether it was truly mania, I have doubts. I stopped sleeping entirely and had a freakish energy in spite of my exhaustion, but I did not have any other classic symptoms of what is labeled a bipolar manic episode. No racing thoughts, no unusual behavior….simply a uncomfortable wakefulness and a huge amount of fear. I was afraid the worst might happen. I could become psychotic. I know now I did not have to fear that. Looking at the trajectory of my “illness” I don’t think I ever had any problem other than emotional, nutritional and drug induced symptoms. The only time I was psychotic was after the use of hallucinogens. It was drug induced mania. I haven’t used an illicit drug in close to 20 years and not once had a psychotic symptom.
After being on the phone everyday with my psychiatrist, come Friday she recommended I go into the hospital to be monitored. I was completely lucid. I was not mad. I was not a danger to myself or others, all I was was terribly awake and afraid. I agreed to go into the hospital. There I was treated with utter contempt and repeatedly humiliated. I became completely disillusioned and disgusted by those mental health workers who were in the broad sense my colleagues.
I could not continue working in mental health because I now clearly saw the terrible insensitivity on the part of most of my colleagues and, in any case, I had lost all ability to deal with any stress at all once the “mania” subsided. (I did try to return to work briefly, but was unable to manage) Finally, after years of forcing myself to work and driving to get there. (I repeatedly told my doctors that I felt unsafe driving…they were unimpressed, seeing only an intelligent, insightful and seemingly competent individual…it is amazing I did not kill myself or someone else in an accident…I’m sure I was worse off than many a drunk.)
I stayed at home and started on the road to recovery, discovering neurofeedback. I had periods of relatively severe mood swings for awhile, what might be called rapid-cycling, but once the neurofeedback kicked in those swings stopped and I soon stopped taking antidepressants for the first time in 15 years. I had no more mood swings and was relatively stable. However, my tolerance for stress was close to zero and continues to be.
I languished at home. I had no structure. When I tried simple part-time work and volunteer jobs I couldn’t handle the stress. One exception was my work as a hospice volunteer. I helped a wonderful old man die. I spent ten months with him being a companion for four hours a week. That was a joy. But after that I have not been able to function well at any work. I do have a small part-time job now. I interview those labeled with developmental disabilities and mentally illness for a study that a university is conducting. The job is flexible and I make my own hours. I had a lot of work in January and February of this year but the assignments have dried up. I’m supposed to hear from them about more work this month. This job has the positive element that I am working with interesting clients again, but the logistics of it have been overwhelming, causing terrible anxiety attacks. I am in fact disabled whether I like it or not. At this point it is the withdrawal process as well as the poisoning of the drugs that is keeping me weak. I am not looking forward to more work coming in, though I am determined to do it. A simple reason I am moved to work is that I can tell people I have a job. Yes, I am ashamed to tell people I do not know that I do not work. Perhaps I shouldn’t care what others think but I do.
In addition, I am determined to work because the hardest part of being on disability is the common reality of being mostly unproductive. This is a self-esteem sucking situation. Now, in the last 14 days since starting my blog, I have for the first time felt impassioned again. I write 3 to 4 hours a day and feel like I am developing a sense of self and purpose once again. I feel better than I have in years. 15 years to be precise. Even though I worked as a social worker the stress was always almost too much to handle, like I said I took repeated periods of disability and I always had the bureaucracy to deal with. Now I work on my own terms. We all need to produce. It is this lack of productivity and structure that further sickens people who have labels of mental illness. We must all get healthy enough to be and feel productive. And in many cases that starts with questioning what the psychiatrists are poisoning us with. Productivity and purpose can be achieved in endless ways, you just have to be creative. My ability to create was smashed to bits by the ingestion of drugs. The fog now begins to lift.
(This post is over three years old. This blog became my job and I became more productive and worked harder and with more passion than I’d ever done on a “real” job. The mainstream is not the only place people accomplish important things! I also did it mostly from bed. Don’t ever believe you can’t contribute to humanity, it’s rarely the case.)