Disability and Dissociative Identity Disorder. I'm trying to figure out how much I want to share about this here, since it is a very sensitive and personal topic. I think the only way to do that is to bluntly admit that I've been hiding for awhile. There are plenty of things I don't want to talk about, and plenty that my alters aren't allowing me to talk about. But because it's a topic that's personal, vulnerable, and lonely in it's
little unspoken corner, I'm going to talk about what I can because I want this
blog to be a resource for others who have or are going through something
similar.
Being on disability somehow took the phrase "I have multiple personalities" from a radical shock value statement, and opened it up to all the vulnerabilities of officially having a disabling mental disorder. I was just recently born into the official disability system with "Severe Anxiety Disorder", "Agoraphobia", and "Dissociative Identity Disorder" stamped on my forehead. I am still settling, internally and externally. Being officially disabled only brings home more acutely how limited I am in every day life, and I have incredible frustration as it sinks in that this is a long term problem.
As undesirable as it may be to be labeled "Disabled", it is a title you really have to fight for when your disability is not clearly obvious. Even with all the shock and adjustment, I know how fortunate I am to have made it this far. But I didn't want it. I still don't want it. It took a while to convince me to even apply. I still struggle to admit to myself that I need help, that there are things other people can do that I can't right now. Gaining disability is a long process. Rather than give a detailed account I thought I might share some impressions of mine.
-The first time I applied, it got turned down. I learned later that this is pretty routine.
-Finding a lawyer
I learned, quickly, to cast a wide net. I looked up all the lawyers I could find within a reasonable radius and sent a mass email selecting the few who responded by how prompt and respectful they were.
-Finding a psychologist
The information I needed about qualifications for someone who could officially diagnose DID were generally not available online. I talked to at least 50 people in the mental field in my state in one week. I spent at least 2 days sitting at the computer with a phone and notepad, doing nothing but looking up names, sending calls, receiving calls, sending out mass emails, and scribbling down names. I had thought initially that I could just go to a local therapist and they would hand me a written test they pulled from their psych bag or something. Then someone finally told me that I needed a psychologist for that. Then I learned it has to be a psychologist qualified to give tests- it is not a small thing. And finally I learned, that for my condition I would want (and I did want!) someone who specialized or had experience dealing with the condition I was testing for, in this case DID. I found 3 people in the state who met that qualification. The one I found who could take me on short notice, a Saturday no less, was 4 hours away, for a test that lasted 4 hours.
-After being at first infuriated with the whole "System" and everyone in it, I gained a strong respect for the professionals I worked with. They were efficient and underpaid. I suspect winning my case was a combination of divine intervention, dumb luck, and skilled professionals who probably took me in mostly out of pity with some intrigue into my situation.
-For the first year after my appeal for a hearing, my alters sabotaged my ability to focus or do any preparation for my case. A month before the hearing it hit me how desperately I did actually need this. I was, fortunately, able to talk with them a bit so that they told me some of what was going on, and they backed off enough that I was able to scramble through my preparation and hearing. But it was not easy. The hardest part of the whole thing, was getting past the amnesia, walls, and blocks in my head that would not allow me to remember or focus on what I needed to.
-The hearing- It is stressful. Sooo stressful. But the anticipation of the hearing was more stressful than the actual event.
Finding lawyers, psychologists, and mucking through red tape.
Being on disability somehow took the phrase "I have multiple personalities" from a radical shock value statement, and opened it up to all the vulnerabilities of officially having a disabling mental disorder. I was just recently born into the official disability system with "Severe Anxiety Disorder", "Agoraphobia", and "Dissociative Identity Disorder" stamped on my forehead. I am still settling, internally and externally. Being officially disabled only brings home more acutely how limited I am in every day life, and I have incredible frustration as it sinks in that this is a long term problem.
As undesirable as it may be to be labeled "Disabled", it is a title you really have to fight for when your disability is not clearly obvious. Even with all the shock and adjustment, I know how fortunate I am to have made it this far. But I didn't want it. I still don't want it. It took a while to convince me to even apply. I still struggle to admit to myself that I need help, that there are things other people can do that I can't right now. Gaining disability is a long process. Rather than give a detailed account I thought I might share some impressions of mine.
-The first time I applied, it got turned down. I learned later that this is pretty routine.
-Finding a lawyer
I learned, quickly, to cast a wide net. I looked up all the lawyers I could find within a reasonable radius and sent a mass email selecting the few who responded by how prompt and respectful they were.
-Finding a psychologist
The information I needed about qualifications for someone who could officially diagnose DID were generally not available online. I talked to at least 50 people in the mental field in my state in one week. I spent at least 2 days sitting at the computer with a phone and notepad, doing nothing but looking up names, sending calls, receiving calls, sending out mass emails, and scribbling down names. I had thought initially that I could just go to a local therapist and they would hand me a written test they pulled from their psych bag or something. Then someone finally told me that I needed a psychologist for that. Then I learned it has to be a psychologist qualified to give tests- it is not a small thing. And finally I learned, that for my condition I would want (and I did want!) someone who specialized or had experience dealing with the condition I was testing for, in this case DID. I found 3 people in the state who met that qualification. The one I found who could take me on short notice, a Saturday no less, was 4 hours away, for a test that lasted 4 hours.
-After being at first infuriated with the whole "System" and everyone in it, I gained a strong respect for the professionals I worked with. They were efficient and underpaid. I suspect winning my case was a combination of divine intervention, dumb luck, and skilled professionals who probably took me in mostly out of pity with some intrigue into my situation.
-For the first year after my appeal for a hearing, my alters sabotaged my ability to focus or do any preparation for my case. A month before the hearing it hit me how desperately I did actually need this. I was, fortunately, able to talk with them a bit so that they told me some of what was going on, and they backed off enough that I was able to scramble through my preparation and hearing. But it was not easy. The hardest part of the whole thing, was getting past the amnesia, walls, and blocks in my head that would not allow me to remember or focus on what I needed to.
-The hearing- It is stressful. Sooo stressful. But the anticipation of the hearing was more stressful than the actual event.
Finding lawyers, psychologists, and mucking through red tape.
- Be picky. As with any professional, don't just go to the nearest one. Go shopping. You are the client, and you want the best you can get. Learn everything you can about them, don't be afraid to ask questions, or to move on to someone else if you are not comfortable.
- Cast a wide net. See how big your options first, then narrow it down.
- Be respectful, but also determined. No one's going to hand anything to you. People will at times be rude, ignorant, and condescending. Expect it, and don't let it stop you.
- Be prepared. You don't want anyone to waste your time, you shouldn't waste theirs. Know your facts, have your paperwork done in advance.
- Accept help. You can't do it all yourself.
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