I’ve had OCD and symptoms all my life which gradually got worse when I was about 16 and I saw a social worker and I was stuck on something and he said “You can get unstuck if you want to”. I was writing things — certain number of days, sunny days, doing writing a certain way – he said, “write when and how you want”. I got worse and worse so he said to see a psychiatrist and I believed he thought I must be crazy. I’m not going to lay on a couch.
Never finished high school because of OCD – if given four essay questions on a test, I would write in such detail on only one of the questions… I couldn’t do it. The teacher said I should see a psychiatrist and I thought I don’t need a couch siting things – stigma…
I got so sick I literally stayed in the house for one year and didn’t wash, didn’t leave…then I went to Christmas party at the counseling youth services and my counselor saw me and said you look really sick.
I knew I needed help so in Sept. 1984 help my grandfather came to get me on but I made sure it was on a certain day on and in a certain car. I saw the doc and he diagnosed me with OCD Neurosis which was something I had never heard of nor could I find out anything about it. He told me that the prognosis was not good…BUT…that prognosis sure made me feel better. He put me on Anafranil and I felt better but had so many rituals and he said to go get admitted to the Toronto General in Oct 1984 for CBT. Nothing was explained to me at that time. I was collecting trays, picking up garbage from the streets but then we signed an agreement if I collected garbage and brought it in then nurse could take my food trays from my collection. I was taking too long to shower so they limited that. I went on walks with interns. I was getting better…I wasn’t picking up garbage and wasn’t hoarding and collecting nearly as much.
Once discharged in Nov 1984, I had nothing but trouble getting a proper psychiatrist to continue with therapy. I couldn’t get CBT. I was discharged to a resident and not the main doctor. I felt bitter being discharged from the hospital because I was beginning to get better, had built social connections, but I wasn’t there yet. I didn’t get any more help because I kept asking for a proper psychiatrist and they only gave me interns. Then they gave me a social worker. After meeting me she said none of my plans with you will work. I will jut listen to you. You should go live in a group home. This was 85-86. I was able to hook up with residents that gave me meds but no therapy. I simply couldn’t believe that the doctors and this social worker had thrown me to the lions.
I got a resident who was moving to private practice. So I was happy. But then he went over boundaries. He took me out for my birthday. His sessions were at his house. He met my family and hung out with us. He bought me a tape recorder to pay him back but I was never any good with money. When we got the fire department at my property, he helped me move my collection of newspapers to other locations. All along, this doctor was being scammed by the person he was living with, which really had nothing to do with me. I went to see him one day and he was crying and in pain as he was injured by his partner. I had to help him which was weird for me as his patient. Then it came out in the press the he was overcharging patients and OHIP, including me. Many of his patients, including me, were supportive of him anyway. He went to jail. I was desperate for help, but this doctor went way over the boundaries between a patient and a doctor. He did listen. I was his patient for seven years.
I was rudderless for a year. So I ended up drinking copiously and was taking Ativan which one psychiatrists told me he wouldn’t take me on as a patient because I was taking Ativan. My mother had done the research to find a doctor for OCD and I went and met a new psychiatrist. This doctor put me in the hospital to detox, and I got off alcohol, and then I had to go back, but it worked. She made 1opm appointments with me because I was sleeping all day. I had legal issues and lived in a hotel and it was above the strip club Jilly’s. I was fascinated by the old architecture of the place and wanted to see the inside of the strip club. This doctor went with me to the strip club so I could see the architecture. Probably not the best place for someone who had to go to CAMH to detox, but I didn’t think about that at the time as all I could think of was the architecture. After that, she took me to Dangerous Dan’s and bought me dinner. She also saw my house which shocked her I guess because she wasn’t familiar with OCD, and certainly didn’t know anything much about hoarding. It was all talk therapy and scripts. Yet another doctor who went beyond boudaries, but was really no help at all – just a holding pattern that wrote scripts
One day I went to see this doctor and she was running late which was typical as she always ran late, sometimes very late. The person before me was sitting there and then the person behind me came and was waiting too. Then another person showed up behind that person. Her receptionist didn’t like me, and I didn’t think much of him. I decided to go to the Beer Store and then come back. She still wasn’t at the office when I got back so went outside and drank some beer then left. I called back later to make another appointment and the receptionist hung up on me. I called back and figured out he had just blocked my number. He was abusive and must have made up a story for the doctor because my mother and I went to her hospital to see her and she got very angry with me told me to leave or she’d call security. I told her you owe me an apology for making me wait. I didn’t ever see her again.
From 1991 to 1996 I wasn’t seeing a doctor and my hoarding and OCD got much worse. In the late nineties, my mother did some research and got me an appointment to see a very renowned psychiatrist at Sunnybrook. My mother joined me during my appointment and at one point tried to ask the doctor a question and the doctor turned to my mother and in a very abrupt tone said, “Be quiet – you are not the patient.” That doctor’s schedule was so full and she couldn’t see me regularly, so I went to a few of her groups instead. Her professional demeanor was horrible. She actually wanted me to get a singulotomy because she thought my case was so bad. But, if I didn’t stop drinking she wouldn’t see me, even though she was actually too busy to see me anyway. I went so far as getting an appointment with a surgeon at Toronto Western, but he would only do the singulotomy if I went two to the three months without a drink, which was impossible unless I had help from a psychiatrist because alcohol had become my medication in lieu of having a relationship with a doctor who was helping me manage actual medication.
I decided to go back to CAMH and was seen by addiction therapist and resident doctors. One resident put me on so many and so much medications that I peed myself and had quite a bit of trouble waking up. It was like he was practicing one me. He kept foisting drugs on me. I got very sick as a result but still managed to do my rituals and get my newspapers. So the addiction specialist talked me into being admitted to CAMH for a month. They didn’t do CBT, and they actually let me get and collect newspapers. I hoarded them in my room, and they knew I was taking them home. My writing began to get worse, and I found it almost impossible to live my life without writing down everything that was happening. If I walked outside I felt compelled to write down which windows had lights on in them, how many cars drove by, and on and on. It was paralyzing.
A social worker came to house and took pictures and she never said I needed help or would call the authorities. I was discharged and then began seeing two doctors from CAMH. One doctor wrote me prescriptions and the other doctor said, “What can I doooooo for you?” I really don’t know what I can do for you?” It was like he was being sarcastic. Another doctor with no real clue about OCD and no way to help me. Are you serious? My writing continued unabated and I was pretty much paraphrasing my life at this point and hoarding newspapers to the point where you couldn’t get inside walk through the house without a real struggle – though the mice, rats, and squirrels seem to find their way.
In 2013 I got back on the waiting the waiting list to see the same doctor at Sunnybrook that didn’t work out in the late nineties. I wasn’t sure, but other doctors and social workers told me she was the best and to go. After a year on that list I called Sunnybrook and they told me they weren’t ready yet to see me. They never even called me. I had to call them. I was told by another patient there it usually takes three years to get an appointment. But, the woman who answered the phone told me that while I waited to see that doctor, I could phone Rick Silver who runs a monthly self-help support group for people with OCD and provided one on one therapy. She gave me his contact information and I called and immediately got to see Rick. That’s when I stopped paraphrasing my life, and I didn’t have to document all the lights in that were on in the neighbourhood when I walked. Rick gave me weekly homework and CBT and it actually worked. He said if I listen to him I will get better, but he also made it clear that there is no cure for OCD.
Now I actually have a social life again. I go out after dark, I’ve been to church again by myself, and I went the CNE which I never thought would be possible. Finally, getting regular CBT has worked for me! I meet with Rick each week, and also participate in the monthly group which I never miss unless there’s a really good reason. Being a part of the monthly group with OCD Canada is part of my CBT!
I have gone from being angry, sad, depressed, and living in a shell, to someone who can go to church by myself and go to the CNE. So much for almost all the doctors in my past who didn’t make any difference. With Rick’s help, I’ve done in six months what I’d never been able to do in my life when seeing doctors or when admitted in a hospital.
I still see same doctor from CAMH who provides me with scripts for medication. Rick helped me get a new family doctor. My old one took three hours for one appointment as he would switch back and forth between patients. My new doctor has me getting healthy, and is professional. He’s helping me be preventative with health. This is helping me because I know it’s necessary to split the OCD and me getting my other health concerns addressed which works for both parts of me. Plus, Rick and my doctor help me navigate with specialists and address problems in my care.
I’m using my full name because there shouldn’t be any stigma associated with OCD or mental disorders. If I had cancer there wouldn’t be any stigma, in fact, people would readily read my history and find inspiration. Perhaps it’s time for people to do the same thing for people with mental disorders.
I have hope for my future, and feel like I finally have a life.
Thank you Rick, you are are a real life saver. See you next week!