There was a case conference yesterday for me. I'm the one who requested it in my home due to my agoraphobia. Many were on board with coming to my home, but CMHA insisted it be in their office.
I got an email yesterday that 2 people were coming to my home before the meeting. I had no clue why so I spent the night before thinking up all the scenarios
They were asking me things I couldn't answer and I was told "I don't take time out of my day normally for these". I said I'm anxious, if you email me your questions, I can answer. Then I hung my head and apologized. That person said "she's going to need case management for 2 to 4 years" to her associate.
Then when I got to the meeting I was left in the waiting area alone even though I had made it clear I would need support waiting. I think they went for a cigarette. There was an automatic door close to me opening and closing that was driving me nuts, really close to where I was sitting. I was told I would need to be more functional for the meeting. That there will always be opening and closing doors. I said I'm sorry, I'm having a bad day. I was told I need to stop saying that, if it continues I'm always going to believe it's a bad day.
I was told you have to push through the anxiety on bad days and practise exposure, even though I did thorough investigation into exposure therapy and you shouldn't attempt on bad days because if you don't do well on those days you'll not want to try again.
I prepared a well thought out document about my needs and goals, because the purpose was to look at my needs and goals and each place to say "we can help with that". They barely touched on the document. When I tried to bring it back to the document I was told this is more for one person who was at the meeting, even though it was for each place to say "I can help with that".
All I heard continually was what each place couldn't do and what I don't qualify for.
They've been pushing CAMH on me, when my psychiatrist and I already looked at it together and decided it was repetition of therapy I already had and not OCD specific therapy, and the psychiatrist at CAMH won't do a phone or cam assessment interview, so I'd have to go to downtown Toronto for the appointment.
After some people left I was visibly upset. The same person asked me why and I said because I didn't get to hear what each place can do for me. The same person said each place had already told me that. Honestly, all I heard was the reason why each place couldn't help and the reason I didn't qualify for this service and that service.
I said I'm okay with therapy, but it needs to be exposure and response prevention therapy for OCD, and the same person said my worker was going to give me exposure therapy (meaning the agoraphobia exposure therapy). I had the exposure therapy previously from someone who could take me places in their vehicle, and the new person can only walk in my neighbourhood with me, which I'm okay with doing, but would also like to focus on whether it can be found from another source who can go to actual public places with me.
I tried to explain exposure therapy is for agoraphobia, but exposure and response therapy is for OCD. OCD is my primary diagnosis and severe. My agoraphobia is complicated by my OCD in that change is hard for people with OCD and if change takes place when I go out in public I panic. My response to that was met with "you're batting down every idea given to you."
I said I knew it was going to turn into this and ran from the room.
I sent an email to one of the places "helping" me saying to please explain their policies on agoraphobia, that the information is needed when I write to Central West Lin (who funds them) and other government organizations about the lack of treatment for my conditions.
I have fought so hard and advocated so hard for myself for a very long time, and to be told I'm batting down every suggestion given to me after all the other negative feedback I was given that day has left me numb.