Charles Feldman’s Recovery Story Part 4– A Noxebo Effect

Charlie Feldman started to experience paranoid schizophrenia while in college. Like many other people these days, he has been able to recover from this illness through such things as medication, support from both peers and professionals, work, volunteer work, and spirituality. Charlie has written his recovery story to document what it was like going through the illness, as well as to give people an understanding that recovery is possible. While still living with this illness, Charlie is no longer affected by the symptoms. Throughout the illness, and the hard times leading to recovery, Charlie’s main interest was in finding meaning in life, which he now finds through his spirituality and community.

To read Charles Feldman’s story from the beginning, go here.

Editor’s Note: We are all familiar with the ‘placebo effect’, less familiar is the ‘noxebo effect’. This is when the sugar pill makes the patient sick.
Words in psychotherapy are the agent, how the words are understood by the patient is the action. We can’t predict that a drug we measure in micrograms will not have a bad effect on an individual– we only know that the risk is low or high. How much more difficult is it to know if a practitioner will be a good therapeutic match for a person in crisis? Charles Feldman describes a mis-match between practitioner and patient. That this went on for six years points to a systemic failure in our response to treating people with mental illness.

I thought the hospital might be a place where I could get some understanding, so I agreed to go. Once there, I thought all the other patients were agents implanted to make it look like it was a hospital. I watched TV for the first time in a long time, and I thought even the newscasters were talking to and about me. I felt very constrained in the hospital, but they would not let me leave.

After a few days. I saw a psychiatrist, Dr. Elliott Barron. I told him what I had been told, that there was no such thing as mental illness. He raised his voice back at me and said: “There is such a thing, I’ve seen it.” From that point on I felt he was part of the conspiracy against me. For the next six years he made me see him, telling me he would put me back in the hospital if I didn’t keep seeing him and keep living with my parents. I did keep seeing him for the next six years, but I didn’t tell him anything that I was really experiencing, feeling that the more I said, the more could be used against me. I thought he knew what I was thinking, because I thought he was reading my mind like everyone else. Living with my parents was stressful, as they tended to be critical anyway, and did not understand what I was going through.

During these six years, I found some stock clerk and factory jobs, but I lost them all due to feeling that people were making it hard for me on purpose. After a while, I settled into a routine where I would go to the library and write all day. I wrote a book, which described the future of society, which was an anarchist world. I felt that because people were reading my mind all over the world, that I could be the center of the world political process, and that anarchism, which could not work otherwise, would now have a chance to work if people all over the world adopted it all at once. I felt that the government did not like the fact that my thoughts were in people’s heads, and that they were trying to disrupt my political goals. Therefore, I disguised the book as fiction, while it was really a political treatise. Afterwards, when I was in recovery, I was embarrassed about the book, and threw it away, which I now regret doing.

During these six years I would hallucinate visually. I would see dangerous animals near me, which was frightening. Most of my hallucinations would happen when I was at home at the end of the day. One day I was lying in bed. I turned my head to the left and saw a lion right next to me. I turned away and then looked back to the left and it was gone. Even though on one level I knew they were not real, it was still scary. I eventually thought about how the conspiracy and the hallucinations could be happening, I hypothesized that it was either a natural phenomenon, or that a scientist was doing it, or that extraterrestrials were doing it, or that it was supernatural. I kept an open mind.

Six years after I had first seen Dr. Barron, I ended up in the hospital again, for the fifth time. Dr. Barron, I later found out, had diagnosed me as schizoaffective. He put me on lithium and some antipsychotics, which did not work. Finally, feeling I was not able to get anywhere with the conspiracy, I got angry at my parents one night. They felt threatened, although I feel I was just angry but not threatening, and they called the police, who took me to a holding cell, and then to Butler Hospital. This time I got on a medication that worked. When I told the doctor I was seeing at the hospital (not Dr. Barron) that I was a Christian Scientist and did not believe in taking medication, he told me about a woman who was a Christian Scientist with a large tumor that kept growing and growing due to a lack of medical treatment. I was surprised that he had taken my profession of being a Christian Scientist seriously, and I took the medication.

One day while I was in the hospital going to an activity, I saw Dr. Barron in the hallway. I had been seeing some of my fellow patients seeming to get better in the few days that I had been there. This was the first time I saw the patients in the hospital as real patients and not just as agents. My medication was starting to work, but I didn’t realize it. Seeing the other patients getting better (I still didn’t believe that I had a mental illness), I told Dr. Barron, in the hallway, that: “I think mental illness is temporary.” He angrily said back to me: “It’s permanent!” And he walked away. I was devastated because I thought what he was saying was that people didn’t get better. I didn’t believe him, but I thought he was being hurtful on purpose.

When I got out of the hospital, my parents found me an apartment, telling the landlord that I was a writer and that I was just moving into town. I started going to The Providence Mental Health Center, now The Providence Center, the local mental health center. I still didn’t realize that the medication was working. I told my new nurse, Jackie Wallace, that I didn’t want to keep taking it. She went and got my new psychiatrist, Dr. Richard Lambert, who asked me how things had been going for me in the past few years. When I told him that things had not been too good, he suggested I try the medication. So I did.

I later found out by reading Dr. Xavier Amador’s book I Am Not Sick, I Don’t Need Help, that Dr. Barron had used exactly the wrong approach by trying to argue with a major belief of mine.

Dr. Lambert, on the other hand, did not try to convince me that there was such a thing as mental illness. He simply empathized with my situation, so I responded by agreeing to an experiment with the medication.

For a while, even when I knew the Prolixin, which I was then taking, had taken away most of the paranoia and the hallucinations, I still felt intellectually that there was no
such thing as mental illness. But I finally had to agree that the medication had helped me, so it must be an illness.

Next: Part 5-Building an Identity

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