Just don't know what to do anymore

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.

Hi CatWhispers and welcome to the forums. It sounds like your treatment so far leaves a lot to be desired. I hope you will be able to find help that will work better for you.

i'm sorry that you've had so much trouble being understood and getting help. i'm very sorry that you lost your cat. i know how it feels to lose a beloved pet.

this is a good place to be, the people here are very supportive and caring. perhaps in the coming days, we can help you sort out some of your issues and problems. pat

ozzie and pat, thank you for your welcome and your thoughts.

I hope I can find some help sorting this all out. I feel so hopeless. All I do these days is sit in my room and stare at the TV. I have no family, no friends, and see no one. I had a very dear friend who died about 3 years ago, and it's been like that for me ever since.

And those who are supposed to help me just will not. It is very disheartening.

I just keep thinking about that treatment plan, and how slanted, untrue and off base it is. Of course they would not let me have a say in writing it, which they are supposed to do.

I'm sure some here have found that some people who should know better take advantage of those with mental illness. And then we are not taken seirously when we try to fight it. I would so welcome any advice. Thank you, and I hope you are all in a much better position than I am!

Debby

Cat, you sure have a lot on your plate! I'm so sorry.

Yes, I've heard of "the system" taking advantage of those THEY deem "less than." It's so enraging and frustrating!

Perhaps you could do some thinking and tell us what of all that you listed you feel takes top priority and we can start whittling down your list.

We're here for you and will support you in any way we can.

Take care.

welcome cat i m so happy you have found this place, there are so many kind people here it has literally changed my life for the better. i wish i could help you with regards to your treatment problems, but i havent had any joy in that department either. just hang in there im sure someone has the know how to help you.
take care

I just read your post and found it ingrossing. It seems as though you are caught in a "government system" where human beings often get "warehoused" and don't have a way out.

Have you contacted Jewish Family Service in your area? When I contacted mine, they were able to help me out financially as well as helping me find the resources I needed for improving my life.

You might want to contact your local Jewish Family Service to see what they have to offer you... I'm sure it would be better than the "help" you seem to be getting.

Shalom...
Ladywolf

Thanks to all who responded and also to all who simply are here and care.

I have been so sick about all that's going on, it's the 2nd night I haven't slept.

Thank you Ladywolf. You thihk this is engrossing, this is just the tip of the iceberg. The details of some of this would make anyone's hair stand on end. But that aside, I had not thought of Jewish Family Serice. Ironically, many years ago I even worked for them.

I'm not sure if there's one in this area, but I will look to see if they are, and at least attempt to call. I guess by now I'm not so optimistic. I probably have exhausted the resources, and for those I haven't, well, it seems once you're branded a troublemaker, it never disappears. And I swear, I really am not. The rep came from a few that screwed up to cover their tracks, and has followed me down the line ever since.

I have been giving thought to what I think I need to do first, difficult for me because of the obsessiveness and diffiuclty in making decisions. But I will try.

Although my ex-therapist still thinks I should back down and yet again let them withdraw promised services and not respond to things they have done that have caused me harm, I just cannot do it anymore. I have been doing it for months, they have treated me even worse, andI feel powerless and like crap because of it.

I guess the most logical thing to do is get the hell out of this program, but it would be foolish to do so until I got some of the services they promised that would be difficult once I left. Moving for one.

They have the means to help me find a place and help me move physically and financially. I also want them to help me stabilize my financial situaiton, which means helping me apply for things, and write waivers for thinjgs like my student loan, which is being taken out of my check (and I can't afford it now).

I also need them to stop being as critical and as they are, to make an attempt to understand my symptoms and my needs, and to help me in the ways I need it, NOT in the way that is easiest for them. This approach was promised me originally.

I also need some supportive therapy, someone who can help me get grounded, help me focus, and who I feel is on my side. This is difficult because I am supposedly must use the people in this program.

As it is tomorrow I have rto calll yet again (3rd time this week) to try and find out if and when they made an appt for me to see the shrink (they keep forgetting, say they forget, then blatantly insist they did not forget. sgih).

and to tell the director I need to talk to her about his treatment plan. How to present that to her is another problem.

This is not a suicide threat, but to be honest, I am so down about all this I'm really tired. It's been going on so long, and I'm really beginning to wonder if it's worth it any more.

I think the whole apartment thing has gotten me feeling the worst.

Cat...keep pounding on those doors until they open. They WANT you to give up. Don't you do it tho. Just keep it up..and you will get action. I really believe this. Do NOT give up.

TGC

I agree, they want me to give up, if for nothing else than if I don't rock the boat, they will never have to account for themselves.

But I have been knocking at the doors, for 3 years now, and it seems they just keep ignoring it. And those who can validate the truth are either gone or are afraid to rock the boat to protect their own situations.

So how do I get them to answer? How do I get believed and taken seriously?

If I start going to the county, it will cause more hostility.

I'm damned if i do and damned if I don't. Ever see that Seinfeld episode where Elaine tries to see a doctor about a rash and is branded "difficult?" That's exactly what's happening, and I"m sure it will follow me to the county too>

I could still use some ideas in fighting this and how to hang in there without any support while i do it.

It's tough, especially since with everything else, I"m in a lot of physical pain because they are not following up on helping me obtain medical and dental care that i deperately need. I'm takinga bout 2400 mg of advil a day just to get by until they help me get the medical care I need, which they have been pussyfooting around with for 3 months now.

Sigh.

>>If I start going to the county, it will cause more hostility

CatWhispers I feel so bad for your situation. It sounds like you are really doing the right things even though you keep seemingly knocking against a brick wall.

Something that effects depression that we discuss over and over again in Cognative Therapy groups is the idea of "forecasting" and "predictions" which can be unhealthy ways to think. In many cases they can lead to self-fulfilling prophesies as well.

That thought struck me in the line I quoted above... you are "predicting" that if you go to the county it will "create hostility". You may believe that from past experience, but it is still a prediction that you can't know to be true.

I am hoping we may come up with other ideas for other avenues to pursue that may help you past this situation, but in the meantime, don't let your mind shoot down the ideas that you can try now even if you think they will be fruitless. Don't think of them as fruitless, think of them as another chance for "them" to get things right finally!

I'm hoping the best for you and keep posting here for as much support and ideas as you need.

I do understand what you're saying about self-fulfilling prophesies. I'm sure that by now in my life, in many ways, that does happen to me..

But in this case, where I've already tried so many approaches, my fears are based on how they've already responded.

My ex-therapist will talk to me a little, but won't contact them because even he thinks they will resent his intervening, which will cause more hostility towards me. So not just my take on the situation.

I have Tourette's, and getting them to understand how it affects my behavior and other symptoms has been a struggle. They either dismiss it or don't believe it. And if I say this can be validated by others who have it, they tell me I'm reading too much and talking to too many others.

An advocate from the Tourette's Assoc. offered to meet with them for an hour or so to give them more of an idea of what it involves and how best to help me.

A very reasonable and constructive suggestion, so I thought.

The answer from my main case manager, who got very annoyed when I suggested it, said "Dr. B is a trained psychiatrist. She knows what she's doing." (She already has admitted to me she has no experience with TS)

The answer from a 2nd worker I approached with the same suggestion. "We're busy and have full schedules. We don't have time to sit and talk with another professional."

My first therapist there was given a gag order and told she could no longer discuss or advocate any case management issues with me. (How dare they dictate what i can and can't do in my sessons!)

It was one of the reasons she finally quit , just a couple of weeks later. I miss her terribly. She was one of the best shrinks I ever had.

However, today i found an obscure contact called Community Advocacy Project. They are sending me releases to sign. I don't know if they can help, or if they really will, but I"ll try anything at this point.

I'm sure my workers will be hostile, but it seems whether I'm a good, quiet little mentally ill girl or not, they treat me the same. So what the hell. Couldn't make it any worse.
.
Then again, i shouldn't say that. I've found that there's always worse. Worse can be very creative.

Debby