MDAO Forum

Support for People with Mood Disorders => General Discussion => Topic started by: Peace on June 02, 2016, 04:40:18 am

Title: Not doing well
Post by: Peace on June 02, 2016, 04:40:18 am
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.
Title: Re: Not doing well
Post by: Dragonfly on June 02, 2016, 07:58:35 pm
Hi Peace, I don't exactly know how to reply to you. It sounds to me that they really weren't listening to you and weren't trying to understand what your problems were.

I don't know what it is to have OCD. I emphasize with you. I do know what it is like to have agoraphobia. When you have this you need someone to lean on for awhile who you feel comfortable with and be in your own environment. You have to take baby steps to start going out.

I am afraid that I am not very good at expressing myself.

Thinking of you.

Title: Re: Not doing well
Post by: paulm on June 03, 2016, 02:25:30 am
Hello Peace. I'm sorry that you are having such a rough time getting help.  I can only relate my own experiences and they may differ very much from yours. So nothing that I write is intended as a criticism.

 As you may know, from having read on here, for about two yrs I was pretty much house locked (agoraphobia)  I went to my mood disorders support group because I felt safe there, but not too many other places.  I found that in order to break out of that locked in cycle I had to practice on all of my days, good or bad. I found that when I didn't make some attempts on my bad days, I just continually had bad days. That doesn't mean that on my bad days that I went shopping at a crowded mall, but I did try and do something even if it was just drive to a gas station and put gas in the car and not say a word to anybody the whole time I was out.  Anyways that was part of my experience and it may be far removed from yours. 

 I did come across some links that may be helpful or it may not:

 Camh does not exposure response therapy specifically, but give it as part of CBT generally. Exposure Response Therapy is a form of CBT and many of the principles are the same.  Below is a link to CAMH that will lead you to other links that may help.

 Good Luck and Take Care. paul m
Title: Re: Not doing well
Post by: Amanda on June 04, 2016, 07:47:51 pm
Hi Peace.  I feel angry and resentful on your behalf. You were not treated respectfully. If there had been a meeting to discuss medical options because you were a cancer patient, you would have been treated with compassion and understanding. I am glad that you advocate yourself - that is what our community needs. I have OCD too and I know how challenging it is.
Title: Re: Not doing well
Post by: Pleeb on June 05, 2016, 07:07:00 pm

You were not treated respectfully. If there had been a meeting to discuss medical options because you
were a cancer patient, you would have been treated with compassion and understanding.

I hear that so often!

Title: Re: Not doing well
Post by: Peace on June 08, 2016, 10:30:01 am
Thank you, everyone  :)

You're all awesome!

Since the meeting I've been having problems sleeping and I've been performing one of my compulsions that I hid for the longest time because I was embarrassed. I trace lines with either my eyes or index finger in everything traceable. I even trace trees, fences, posts, etc. when I go for walks.

I really appreciate all the support and feedback, I'm just not in a well enough place to answer each individually.

It was wonderful to have received so much support and so many suggestions.  :)

I was just given a psychologist to speak to who specializes in ERP. When I phoned I found he charges $210 per hour. I was also given a referral to a PSW who can take me to the doctor at a rate of $60 per hour. Add that to the $310 per hour for a lawyer and I'm told I'm not following suggestions because I express concern over spending $580 per hour on the suggestions and referrals being given to me.

When I start writing my letters I'm going to use the cancer comparison. Would a person with a medical condition be asked to pay $370 per hour (treatment, getting to the doctor) or would their treatment be covered by provincial health insurance, and would there be supports in place to help them get to the doctor? I don't even care for myself anymore because I want nothing to do with a certain mental health association, but I want to advocate for other vulnerable people.

Ranting again :( My apologies
Title: Re: Not doing well
Post by: Amanda on June 18, 2016, 07:57:19 am
Good for you for taking time to advocate for others when you are not well yourself!
Title: Re: Not doing well
Post by: Peace on June 20, 2016, 05:40:18 am
Thanks, Amanda  :) Appreciate the support!  :)