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Jeff’s Story

Network, Winter 2006

I have obsessive-compulsive disorder. For the majority of my life I was reluctant to admit that it was a problem. I just thought it was a quirk of my personality, definitely not an illness. It wasn’t until I was 24 years old that I actually sought help from my general practitioner.

I started trying medication to help with my symptoms but then my symptoms, for whatever reason, took a serious turn for the worse. Ever since then, it’s been a free fall down, which is where I am today. Roughly a year after I started taking medications, a year after it had gotten worse, I was able to admit that I needed even more help. That’s when I started researching for more specialized mental health services.

For me, it’s very difficult to do a lot of things, especially research. I have obsessions with reading. I have to re-read things. It was the hardest thing, it was almost torture. Research would take me probably ten times longer than the average person to do these things.

I don’t have anyone overseeing the collaboration of different professionals. It’s all up to me and I don’t like that. Nobody’s ever come to me and given me the “master plan” on how I’m going to get better. I’m just left to fill in the pieces. It’s terrifying.

Access to psychiatrists in my region is very difficult — the waiting list is six months to a year for lots of them. Even when you get in to see a psychiatrist, they’re only there to prescribe medication. Because they have so many patients, they don’t have the time to spend with you, get to know you, make a proper diagnosis, learn the intricacies of what’s going on.

I’m lucky to have a GP who is pretty familiar with mental health issues. He’s very open-minded, and he’s knowledgeable about psychiatric drugs. I speak very highly of my GP but even then, besides medication, he has no real course of action. He’s not a psychologist, he’s not a cognitive behaviour therapist. He had no idea if there was any OHIP-covered cognitive behavioural therapy [one of the recommended treatments for OCD]. He’s a busy guy, so he couldn’t look it up for me. So I was left with the task of educating myself, of familiarizing myself with the system.

I called and I got my GP to make a referral to the treatment program at a local hospital. They specialize in providing therapy for OCD and other anxiety disorders.

When I first contacted them, there was a daunting waiting list — I thought the day would never come that I would even be considered to be treated there.

Eventually I got the application. I don’t know if they realize this, but filling out those applications is something that I just can’t do. I have an obsessional fear of official paperwork. Needless to say, it took me an incredibly long period of time to fill out those things.

Eventually I had my first appointment there and it went well. Then I had my second appointment, and it went well too, so we decided that I fit the criteria and they were willing to help me, to do CBT with me in a group setting. Unfortunately, by then so much time had elapsed, with me free falling, that I had fallen to a level where I was unable to leave the house. I’m actually being told the news that I’ve been waiting for, I don’t know for how long, maybe six months, and when I’m told the news I have to respond — and they agree with me — that my symptoms are now too severe for CBT.

Subsequently, I had a mental health nurse coming to the house once per week, to fill the gap for two months, and it was pretty great. It was nice of her coming here, and she actually got me access to a psychiatrist in this area. He wasn’t even accepting patients at the time, but she pulled a few strings and she got me to see him. But because he was fully booked, and he wasn’t taking new patients, the appointments were only for a short time, just for a medication adjustment.

I’ve basically run out of medication now. I’ve been left to harshly withdraw from a medication, which has been extremely difficult. The symptoms of my OCD have spiked and gotten terribly worse. I don’t want to sound morbid here, but they’ve gotten to an almost unlivable level.

I can’t emphasize, there’s a huge barrier for people with severe OCD because of our fears. It’s not necessarily that we’re afraid to go outside. But we can’t get to see the doctors or even talk to them sometimes. I’ve met an individual who has very similar circumstances through the OCD Network [a self-help organization]. It’s so difficult to even go to a bank or a doctor, to keep your appointments. I don’t know how that could be addressed, unless they could come to you. I don’t know if that’s practical, if that fits into the budget of things.

As far as I know, I’ve done everything according to the book. Me and my family are basically left with “what the hell do I do now?” The “easy” answer is going to the local emergency room. I mean, that’s what you do in an emergency, right? But there are so many barriers for me to get to an emergency room. I would have to complete an exhausting list of rituals just to leave the house.

My family is stuck in a very difficult situation. They see their son, their brother, their boyfriend, spiralling downwards, getting worse. Their hands are tied, they don’t know what to do, they don’t have access to anything. I feel so bad for them. I’m suffering the worst thing in my life, bar none, but I’m extremely worried about them. They need counselling or therapy too, because they’ve watched me suffer with this for a really long time. If somebody could come here and help them, it would be great.

I find that there is a lack of continuity between these places. They’re so segregated. I’ve never been hospitalized or had anything physically wrong with me, but I can imagine, it would seem like things would just flow.

I know that general practitioners have a role to play, but their knowledge of mental health issues… they’re not experts in this. They’re so bogged down with work that they don’t have time to read about different programs in the area. I remember nights when I would say, “Okay, we’re going to start from square one, I really have to do this now, I have to find out where to go and get better.” There’s a lack of communication between different programs, and other people don’t know what other people are doing.

At least for me, and I’m sure for others, it’s been very difficult figuring out what my next move is, where to go and what to do. I feel very alone in this process.

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