Community: Real Life

The misdiagnosis


Toni

Toni is a 20-year-old from Leicester, who is currently unable to work due to a compulsive disorder. She talks us through the ups and down of this devastating illness.
Entry: 4

Tonis visit to a cognitive behavioral therapy clinic reevaluates her condition and gives her new hope for the future.

Well, there have been rather interesting developments in what's happening with me. It's a bit of a long story, so please bear with me.

A few weeks ago, I finally got an appointment for cognitive behaviour therapy (CBT). This is considered to be the best treatment for people with Obsessive Compulsive Disorder (OCD) and centres around 'exposure' therapy. What this basically means is, if you have an irrational fear of germs, the CBT people make you put your hands into a toilet and then eat a meal without washing your hands.

I was very apprehensive about going to the CBT appointment. The main fear with my OCD is of cancer and death. What exactly were they going to expose me to? Were they going to give me cancer? I had a feeling it wasn't going to be worth it, but boy was I wrong. Mark, the psychotherapist I saw, was easily the most intelligent medical professional I have met so far in my bid to be free of OCD. He instantly put me at ease and made me feel I was in professional hands.  I'd initially expected a twenty minute appointment (like I have with my psychiatrist) but I was actually there for well over two hours.

I had to tell him everything about my past; what I was afraid of as a child; my experiences with cancer. Everything. Talking about your innermost thoughts is actually emotionally exhausting, as you have to relive the worst periods of your life. After this long talk, we'd established I had a deep distrust of the medical profession. My mother was ill for a long time before finally being diagnosed with the cancer that ended her life. Then the penny dropped. Mark said that he didn't think I had OCD at all.

I stared at him in utter disbelief. For a year, I had been being treated for OCD and firmly believed that was my illness. Mark suggested that my initial diagnosis was not entirely correct. The new diagnosis was hypochondriacal disorder. Whilst this is an element of OCD, I was experiencing much higher fear levels over illness. I had moved past 'normal' OCD and on to something else.

"It has been an entire year; a year I will never get back; a year that has been dominated by this illness."

For the past year, I have religiously read books on OCD, I've become involved with the OCD charity, OCD-UK and, of course, written this diary based on the assumption I had OCD. Whilst there are definitely elements of obsessive compulsion about my condition, that is not my main problem and I should be treated differently, using slightly different medication and therapy options.

In all honesty, I was livid. It has been an entire year; a year I will never get back; a year that has been dominated by this illness. And a year on, nothing has changed. I've been on drugs that have made me violently sick, made me gain weight, made me so weak I couldn't even get out of bed but I didn't mind because I thought it was all for the greater good. Then to find out there had been a mistake, a mistake my psychiatrist should have spotted, was incredibly upsetting. I'm basically right back at square one in terms of treatment.

So what has been the upshot of all this? I've gone on to a waiting list for continual CBT for hypocondriacal disorder, but that could take up to a year to come through. I've changed psychiatrists and am about to start a different set of drugs. Dealing with the withdrawal from my current drugs has been absolutely horrific.

I'm not entirely sure what comes next. I've just got to wait for CBT and hope these new drugs make even a small difference. I'm also going to have to see yet another therapist for a course of anxiety management classes, which my new psychiatrist believes may be of some use to me. I start the new set of drugs next week, and if there are any effects, they'll kick in around two weeks from then. I guess I'm hoping they will help and now that I've been properly diagnosed things may begin to improve. I still cannot believe this wasn't noticed earlier. The CBT guy showed me the medical definition of hypochondriacal disorder and I literally ticked every box.

So to sum up, since my last diary everything has changed and the new era begins next week. I'll talk to y'all in a couple of weeks.


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