Hi everyone. I'm new here, and very glad to have found you all. I really need some help and advice because I am at a loss how to handle the situation I have found myself in. I'll try and keep it as brief as possible, but would be happy to go into more detail on any of the issues if mroe informaiton would help in perhaps suggestions on what to do. As it is, I feel like my situation is hopeless and can see no way out.
I have a very complex, unique combination of illnesses, symptoms and traits. The most prevalent and recognizable are Tourette's Syndrome, OCD, Obsessive Disorder, ADHD, Compulsive Eating Disorder (might be related to other disorders), Clinical Depression, PTSD/Abuse Survival, a recent gambling compulsion (which I have gratefully been able to get under control) and Chronic Fatigue Syndrome is also suspected. I have a very limited funcitoning level which seems to be from constant physical exhaustion and weakness and lack of focus. Some doctors in my history have suspected possible slight brain damage from the abuse I suffered, since some was to the head on a fairly regular basis. The abuse was physical, emotional and sexual.
Since some of the symptoms I have don't exactly fit into my diagnoses, I have tried to do some reading, and think there may be some possibility of high-level functioning autism, some sensory problems, and possibly Avoidant Personality Disorder, of which I seem to have every single symptom. More on these possibilities in a bit.
Add to all this the fact that I have not been able to tolerate any medications. Everything I have tried (and it's been quite a number) has either not worked, I have acclamated to very quickly, or has given me such severe and odd side effects, it was impossible to continue with them.
The diagnoses were also made clinically, and early on before I realized how much of my behavior and thought processes were different, and therefore, I feel, the diagnoses were possibly incomplete or wrong, which may be why the attempts I've had at help have not worked.
On the other hand, I seem to have a very high IQ, and a fairly decent sense of humor, both of which got me through life (though barely) with very few people knowing really how screwed up I was, including me. I was not diagnosed with the Tourettes and some of the conditions until I was in my early 40's, when my funcitoning became so bad, I could no longer work. I had been lucky and fallen into a job that was perfect for me, but when that industry was no longer an option, I could no longer function. Tha't when I began to seek out answers and help.
Most of the therapy, help, etc., I have had has been ineffectual, although fairly routine. Many just could not understand the complexity of what I live with. The few times I was lucky enough to get someone who really tried, for one reason or another, they had to discontinue, leave, etc. But where I have ended up is my problem....
Because I ended up in a very bad living situation and needed help with housing issues, I was directed to a local agency that helped those with mental illness with that very problem. To be able to work with them, I had to change my case manager and therapist (who I liked and worked well with) to another part of the county's system. Unfortunately, I had very poor workers there, and they caused more damage than help. The place they found for me to live was owned by someone who did not keep things up, and also, in moving me over, did some things that ended up causing me to lose all my belongings. Instead of trying to make amends and help me recoup, they closed my case, which took me months to get reopened. The case manager I had there was also incompetent. During this time I asked for my workers to be changed quite a few times, and it was always refused.
The one person who I could rely on, and who was supportive and helpful was my therapist. Even she was lied to and promises to her were even broken. 3 years later, I still have not had the help that was promised, even with things like applying for housing help, food stamps (I am on disability), help with financiial problems, etc., even though I have begged for help to stabilize my life so I can at least try to move on.
Because I tried to fight some of the injustices that were being heaped on me, of course I got a bad rep. On top of that, reports were written in my files that blamed me for things that were caused by others.
In case you question, the therapist I had said to me many times if she didn't experience what I had gone through along with me, she would have trouble believing it herself. But she was my only source of support and one person who understood and knew the truth.
However, she was eventually fired, the reason being administration wanted her to take a promotion and stop doing therapy, she refused, and the rest is history.
The worst of it is I lost my one source of validation and protection.
My new therapist was fairly good, but it took him a while to realize the label I had as a troublemaker was untrue. He intervened and all case management was to go through him, at first to prove to me that when handled right they would do what they needed to. Boy, was he wrong. They did the same to him, and he finally realized it became a matter of them covering each other's tracks.
Then it was suggested that I might fit into a new treatment approach which was a team approach, and very intensive.
My therapist and I met with both the director and the person who would be my new therapist. We both voiced my concerns over the problems I might encounter, the biggest being that most do not understand my illness, and I need people who are open-minded and willing to work a bit outside the box. My therapist also emphasized to my new therapist that I needed someone who would be my support and could help me communicate with the rest, especially if there were problems. We got a resounding "of course" to all our concerns, and were assured this team was geared towards helping anyone,even though they agreed I was not their typical client.
During most of this and before, the therapist I was now leaving had felt that the best approach was not to rock the boat. No matter what they did or didn't do, no matter what they said (one case manager told me I was wasting her life when I got upset that she held a form for 4 months, and would now miss the deadline), yet they still did nothing.
Now the new team is giving me the same problems. The new therapist who said she hoped I could talk to her about anything and would be my support turned out to be judgemental and critical. The first time I met with her alone, she complained about my loud manner. Hell, I'm Jewish and from NY. I talk loud. All I need with my history is more reason to hate myself.
When I try to explain my symptoms, i am met with disbelief, and suggestions to perhaps get information from the Tourette's Assoc to explailn them have been met with anger. I was told they have to time to deal with yet another professional, they are busy enough.
When I first joined this program (which was a risk) i was promised that they would arrange to take me and my cat, who was sick at the time, to the vet. They procrastinated for 2 months, during which time my cat not only suffered, but got so bad I had to have him put to sleep. Chances are with early treatment he would have been okay, and lived at least another year or so. They now say it was my fault because the 3rd person who was told to take me to the vet 1 1/2 months later was my therapist, and I stupidly said I didn't want to miss therapy.
The psychiatrist is another winner. She also is constantly telling me my manner is unacceptable when I raise my voice. Hell, I suffer from anxiety problems too and when I am scared, my voice gets louder. I have never, ever been threatening to anyone, nor have i ever been verbally abusive. She has also referred to my relating of possibly dangerous behaviors (skin gouging and touching sharp and hot objects) as unimportant, and when I requested going for possible diagnoses of other illnesses, she put me off.
She claims the only thing that matters is treating the symptoms, doesn't matter what it's called.
I feel the cause of the symptoms might affect the choice of treatment, especially since nothing traditional has worked.
And i am stuck with these people, since they are the only ones in this program. I am afraid to go back to the previous, where I had the poor case managent. I think much of the negative attitude towards me is because of things they were told by these previous people.
I have contacted my previous therapist, but his feelling is that if he interferes, it would cause more trouble and alientation. Although he will help me possibly write a letter or plan how to deal with them, he also feels i should not state anything they are doing that is bad for me, in order to keep them from being more unwilling.
however, that approach has not worked either. the "nicer" i am, the less they do. they more i ask, the less they do. I am stuck and don't know where to turn.
And I feel hopeless and am ready to give up. I just read my new "treatment plan." It contains things that are just not true, nothing i have asked to work on, things they never discussed with me, and statements that totally disregard my true situation. For example, one of thefirst things they said they would do is help me find a new place to live and help me move. They now have inferrred i am constantly complaining about my landlord without reason. I have lived here almost 3 years and he has fixed nothing. Sewage is backing up and people have moved out because of it. I have spoken to philadelphia legal services, who have heard of him and know he is a slum lord, but they can do nothing except tell me to move. But since they don't feel like doing this, suddenly it's my fault.
I am sorry this is so long, but I just don't know what to do. I can't stand the thought of letting them do this stuff to me any more and suffering for it just to get them to give me the minimal help, not even the help I truly need. When I ask for it, they say they don't have time. they expect me to just respond to what they do, regardless of what I need, and that isn't working. And being on medicare, I am limited where I can go.
As well as being limited by my signing up for the program.
Nami has been of no help.
I don't know where to turn, or how to stop feeling terrified or hopeless anymore. I was hoping someone might be able to give me some advice or direction.
thank you if you had the patience to read all this. And thank you for being here.
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