nope.

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I'm really sick of playing this game where I have to say and do certain things to get any health care in the context that I'm not seen as crazy. The truth is that my OCD symptoms are so bad they literally make me want to kill myself.
Since I don't consider that an option, I merely sit in misery when things get that bad. I also have chronic pain though. The way most doctors operate is that if you are crazy you can't legitimately have chronic physical health problems. Once you admit to needing help regarding chronic psych issues, any previously regarded legitimate problems, especially vague things like chronic rheumatoid issues are immediately then shuffled into the crazy file and you cease to receive treatment until your doctors get the "OK" from your psych team.

Their are people who don't experience this.
These are people who, ironically, are not as explicit about their symptoms.

I have said, specifically, i need a case manager and an advocate and that was not even acknowledged. I am both told I am an excellent advocate for myself and completely f*****g ignored. I really want to kill myself most days lately but I don't develop a plan because I just assume "next time I see my doctor we'll fix something". And then I see a doctor and it's more disappointment.

Eventually I'm going to consider killing myself an option because when people get desperate they lose themselves and they lose what they value, they lose their core beliefs. I'm supposed to play some sort of ridiculous game, I don't know the rules, and I never win any way. I never benefit from any of this dancing around between specialists, really.

Meanwhile, I can tell I'm starting to really suffer damage in my shoulder because I'm losing feeling in my upper arm frequently and sometimes it is randomly weakened. But no one will listen.
My options are pretty much nothing. If i sleep for two days because showering, cooking and cleaning the kitchen saps all of my energy, that is somehow psych related. If I scrub the bathroom until I pass out and my body screams in pain because I'm having an ocd freakout it's evidence I'm not in as much pain as I say.
NO.

Eventually I'll give up. Like really give up.
And, as I told my mother "I am the f*****g manifestation of tenacity" so at that point, whatever I set out to do I'll just do- like everything else in my life. Because why bother anymore?

My providers don't really listen when I need them to because, ironically, they tell me I can express myself so well.
WONDERFUL, isn't it?

I have a psych appointment in a week, but my NSAIDs aren't really working. So my option is to suck up the pain for about a week- which leaves me to be not really functional. And when I go into psych and they ask what I did this week and I tell them, it won't make sense to them that it's because of rheumatoid pain, it's will obviously be because I'm crazy. Because they are psych specialists and clearly have more knowledge about my life, body, and symptoms, having known me a whole 40 minutes. Why would I know more, having lived as me my whole life?

The whole health system is set up for people to fail unless you are already ok.

I agree with a lot of what you said. If you have any mental health problems at all, they start thinking ALL your physical problems are "in your head." They don't listen.

Is there any way you can see a new doctor you haven't seen before, for a "second" objective opinion?

I wish I could offer some real advice, but your situation sounds very confusing. The only thing I can say is that if you talk to the doctor about your shoulder, don't mention that you had an OCD freak out. Just say you cleaned the bathroom and it caused a tremendous amount of pain. They don't need to know why you cleaned the bathroom.

In some ways, I think going to the doctor is kind of like going to court. You need to present evidence that supports your case and gloss over/avoid evidence that might throw doubt onto it. It is hard to do that when "honesty" is something we highly value. You might feel like you are lying if you leave something out. However, it is important to not clutter up the core of the problems by putting issues out there that might distract the doctor from the problem you want the doctor to focus on.

Perhaps you can discuss with your mom, if she is sympathetic to your plight, what the issues are. She might be able to help you narrow down the symptoms you need to discuss. Write them down, then do not deviate from your list when you go to see the doctor.

Also, have you tried any physical therapy? I have had good success with some pain-related things through that. My PT was much better than any doctor! If your pain is related to body movement in any way, PT might help that without medication.

I know, sort of anyway, what you're talking about.

I've only ever had luck getting people to listen to my "ret*d, incapable of self-awareness" self a couple of ways.

One of them is to flatter and humbly beg. Play a movie part-- The Sweet Little Disabled Girl. You have to be really careful how you do it though. Pretty tears will help-- sobbing will hurt. Humbly pleading in a voice that is still soft and pleasing will help-- a wheedling, whining, high-pitched, or nasal tone will hurt. Flattering the doctor's competence will help-- doing it enough that they know you're flattering them will hurt. Glancing at them occasionally while mostly looking at your hands or your shoes will help. Staring at them, or at the wall beside their head, or doing anything they're going to confuse for "eye contact" will hurt.

Which is, frankly, SICK AS ALL HELL. You shouldn't have to play a part to get medical attention. No one should. I've seen that s**t before; it isn't OK.

But it is what it is.

The other one is to credibly and politely threaten. When doing this, as far as I can gather, you name off all the things they've done that could be considered medical neglect or malpractice, and you explain that either they are going to take you seriously or you are going to have to discuss it with a lawyer.

It has to be credible-- you have to sound literate, and intelligent, and like the kind of person who could tell a reasonable suit from a frivolous one. You've probably got that nailed.

It helps to be a guy, and to be in a position of respect and authority. My husband has gotten away with it a few times. He uses his "I don't care who you are; I am the engineer in charge of this project" voice, and people actually listen. You're pretty much screwed on that front, being female and young-ish and IIRC a student.

You have to be sure of yourself, and controlled. You can't raise your voice, or cuss, or have your voice waver, or anything. It has to be perfectly calm and rational; if it's not, it goes in the "mental case" file under "threats against self and others." You have to use about the same tone that you would use to ask for a refund on 3 pounds of meat that turned out to be green when you got it out of the package or something.

I'm really sorry to be giving that kind of advice. It's f*****g PATHETIC that a person has to play a part in order to get decent medical care. But unfortunately such is the state of affairs in America today.

Good luck. I really hope something improves.

A lot of mental health care workers I've dealt with have been totally clueless about mental illness. They know what their textbooks say, but they don't "get it."
I've had docs tell me with a satisfied patronizing smile that I'm "just fine." As if their proclamation will make me feel better. There is nothing worse then not being taken seriously when you need help.

Thanks for the replies. I think it's hard posting in The Haven because [i think?] the guidelines are that we are supposed to just offer neutral support but that's hard for me. I do best with brainstorming and with a lot of this "Holy crap stupid healthcare! ARGH!" stuff... it doesn't really seem appropriate to post it other places? So, to be clear, brainstorming is good, and it's not that I would really want criticism... so I mean that part of The Haven is kind of nice when I feel all beat up and down and like things are just sucky. But like, trying to come up with a plan is great.

This is good. I actually find that I always am telling people to make a sort of note card if they are having problems remembering things when they go to an appointment or having trouble explaining things. Of course, I don't end up doing that myself. I was able to talk to my psychologist today [I don't have a psychiatrist, which is who I am going to see on Monday- I really need meds], and I looked this thread over before that.
He helped me go over some of the things to talk about specifically with the psychiatrist and what to jot down beforehand. Also said to go over them with my boyfriend, since he observes a lot of the things also.


Eh. I hate to say this- I've had to do this before. Only a couple times, and it only works in writing for me. Otherwise they pull the crazy card no matter what I say. If it's in writing, they can't muck about with what I am or am not saying and have to concede that my concerns with their actions are legitimate. One was when a doctor randomly accused me of forging a script for a controlled substance- which turned out to be an error on the pharmacy's part. My pharmacist and therapist were both really shocked to hear that my doctor didn't immediately just bring it up with me but started a whole investigation and let it go on and on. I only accidentally found out about it. When I brought it to the attention of my pharmacist [who didn't know the specifics of why my doctor had been calling for information], my pharmacist righted the situation with EVERYTHING- records, pertinent agencies, everything- within a day.
So I was pissed to say the least.


It's not like I have this idea that there is this big conspiracy or all doctors are terrible or have it out for me. I just think a lot of them have misconceptions, might be a bit burned out, or simply don't have the experience to deal with crazy+ other stuff. The latter is usually the case if they are a specialist and it really messes with my health a lot.
The reverse is true for mental health providers, of any sort, if they have limited experience with in their field. They might be REALLY REALLY great at what they are used to doing- and that doesn't mean that they are bad or not really great... AT WHAT THEY USUALLY DO.

But someone can be in practice for a decade and have a usual demographic they see or be used to looking for a certain presentation OR be convinced that is the only way something presents for a number of reasons- that is the only way they have diagnosed and were never challenged, they usually get patients channeled from a certain pool, whatever. If they aren't used to having clients who have chronic pain or who are demanding of a "team effort" in treatment, they may feel challenged.

And so that creates problems. For me.
Uh.. blahblahblah.

I feel a bit better having looked back at this thread and having talked to my therapist a bit. Appreciate the feedback.

I have this problem, too. I am actually quite concerned about coming out as autistic to my health providers because I need treatment for my lupus. I am super fortunate that I was quiet about my psych needs prior to my SLE diagnosis, but I have had at least one GP dismiss physical health issues despite my SLE diagnosis and specialists treating me because I went to her for SSRI prescription. The irony is chronic illness often requires some sort of psych med support due to how crappy we feel forever.

I can't access disability services despite both SLE and autism, or seemingly any support people. I have just put in a self referral for an ASD clinic for a clin psych to see if I can access some help through there.

I'm sorry you are going through this but I totally relate. I have had lupus symptoms since I was in my 20's, but because I was a psych patient for a lot of years nobody ever took it seriously until I was very sick and no longer a psych patient. I don't know how to fix this issue.