23 March, 2006

Long and rambling

Behind the cut there is a rambling post about childhood abuse stuff and current frustrations with health professionals. It may or may not be triggering, and it’s definitely self-centered, so be aware before you read. Oh, and it’s not about spanking in any but the most general way.

When I was a kid and got hurt, or someone hit me, they would often say, “Stop crying, that didn’t hurt.” And if I didn’t stop crying, they would “give me something to cry about.” Which is to say, hit me harder, hurt me more than I was already hurting. I suppose it was intended to give me a sense of perspective.

Another way my mother would encourage me to have a sense of perspective was to say, “If people could survive Auschwitz, surely you can survive this.” I was an adult before it occurred to me to think that most people didn’t survive.

When I complained about someone saying something that hurt my feelings, they would remind me that sticks and stones can break my bones, but words could never hurt me. My family always said I was too sensitive. They say this even more now, when I object to them saying things that are categorically racist (black neighborhoods are dirty because black people are lazy; black men are in jail because they’re all criminals… and we won’t even go into their “joking” use of the n-word around me, or their delight in referring to me as a “negro” because I won the National Achievement Award for Outstanding Negro Scholars when I was in high school). Because, of course, they don’t see me as black, so they don’t mean me when they say that blacks are bad people. And if I take it personally, clearly, I’m way too sensitive.

Why do I bring this up?

Because I feel like my health care providers are doing exactly the same thing right now.

My doctor is one of those people who thinks that the problem with fibromyalgia is that the people who have it just have a low pain tolerance (and, by the way, don’t exercise enough). It doesn’t matter that I experience migraines, abscessed teeth, and broken bones as mild discomfort. Because he can’t see a testable cause for the subjectively greater pain of fibromyalgia, he has determined that the problem is a low pain threshold. These things don’t really hurt, he is essentially saying. (And then went on to comment on how if you have a headache and then bang your foot, you stop noticing the headache because of the pain in your foot. You know, why not go get something to really cry about….)

And then there are the mental health professionals I’ve been dealing with.

I was in the psych ward recently because I made myself admit to W. and one of my friends that I was feeling suicidal. I felt guilty for admitting this, since it felt manipulative to ask for help (I was nearly 15% sure that I didn’t really want to kill myself, after all). My experience in the psych ward was horrible—I had no access to any of the things that make me feel safe or comforted, but the staff there acted as though I was unreasonable to not say I felt safe there. When I commented that it felt like being in the psych ward was a punishment for asking for help, I had more than one doctor on staff tell me it wasn’t a punishment, and then sternly add, “Well, now you know what happens when you tell people you’re suicidal.” (I had managed to convince myself they hadn’t really said that, until W. mentioned one of the doctors saying it to her as well.)

The staff at the hospital misdiagnosed me (in not only my opinion, but in the opinion of everyone who knows me that I’ve talked about this with) with borderline personality disorder. They offered no help for the panic attacks and anxiety that caused me to become suicidal. The antidepressant they had me start ended up causing increased anxiety (this isn’t their fault: it’s an antidepressant that usually reduces anxiety).

And over and over, the therapists and psychiatrists I’ve seen have insisted that since my life now is good, I’ve got no real reason to be so anxious. They tell me that I have a low tolerance for distress, and that my problem is that I am unable (read that: unwilling) to just get on with living my life and choosing not to feel the emotional upsets. When I asked for something I could do to reduce anxiety and panic attacks last week, the therapist I was seeing gave me a handout for people with a low tolerance for frustration that said, among other things, that a good way to better tolerate “distress” is “With comparisons: Compare yourself to people coping the same as you or less well than you. Compare yourself to those less fortunate than you; read about disasters, others’ suffering.” Because if people could survive Auschwitz….

I recognize that these people mean well. They are probably trying to help me. But somehow, it feels like they’re doing exactly the same things my family did to help me when I was little. If my body hurts, it is because I am a wimp, and I should be distracted with “real” pain. If my feelings are hurt, I should be told that I’m too sensitive, and reminded that other people are worse off than I am. They should tell me there’s nothing to be upset about, rather than help me to cope with the things that are causing almost constant anxiety.

Rather than getting better services, more suited to my needs (which is what my old therapist said would happen if I went to the psych ward), I have been dropped by my old therapist, and shunted from one person to another. I haven’t had a therapy session that wasn’t either an intake for care, or a termination of services since February. I am likely to stay at the center I’ve been referred to now, and they told me today that I won’t be assigned to a therapist for three more weeks. On the advice of the psychiatrists, given the adverse effects of the meds, I’m not currently on any medications for anxiety or depression.

And boy oh boy, are my inner children ticked off at me. I forced myself to admit, over and over, that I was definitely physically and emotionally abused as a child, and probably sexually abused. This by itself gives me severe panic attacks after doing it, and I’ve had to do it over and over and over, without actually getting any help in coping. Instead, I’ve been informed that my life is good, I’m clearly successful and accomplished, I am in a good relationship, and I am able to be in contact with my family, so I should stop feeling so anxious and depressed. (The psychiatrist doing the intake today actually said that in pretty much those words.)

I keep taking the risk to trust people, in the hope of getting some help, and instead, they send me to someone else, telling me I should be able to manage.

It really frustrates me. And I can’t help but think, “Would I be getting more services if I were acting out?” But I’m trapped in being “good.” And because the mental health providers recognize that I’m not going to actually do anything to hurt myself or others, or anything impulsive or dangerous, they trust that they can leave me to muddle along on my own with less help than I was getting when this whole business started. And I can’t help but feel the same desperation I felt when I was a teenager, knowing I needed help dealing with all of the stuff that had gone on, and realizing that it wasn’t going to come any time soon. (Yes, rationally, three weeks isn’t very long. But emotionally, it’s about 2 ½ weeks longer than I can handle right now.)


Meridith said...

Though we don't know each other, I empathize with you about the care you have been receiving and the penealties associated with being too "good". The remark that makes it into my personal top ten least helpful therapist remarks is "there really isn't anything wrong with you". I didn't know I had to be "bad" to get good care. Persevere.

agiftofgrace said...

Dyke Grrl, YOU are the consumer. All these other people work for YOU. They're not all-powerful beings of some kind; they don't have the right to control your life. Just as a medical doctor or dentist or eye doctor provides you with a service, mental health professionals provide you with a service--and if their services are unsatisfactory, you have the right to complain and the right to find someone else. It doesn't make you non-compliant--it makes you a good consumer.

You definitely need a primary care physician who believes that fibro is real. It will make all the difference to you. It did to me. And you DO recognize, don't you, that untreated chronic physical pain causes suicidal thoughts and desires? You know this, right?

And you know that people with fibro have unusually HIGH pain threshholds and tolerances, right? And you know that fibro causes panic attacks, and causes depression? These are all symptoms of fibro, hon.

Have you tried looking on Google for informaton about anxiety disorders? There's a ton of it out there. Here is a message board that I found when I typed in "panic attack."


This is a link to a website about misdiagnosis.

This last link is to the website that saved my sanity, by the doctor who wrote the book on fibromyalgia--literally, she wrote the first book on it.


You may find yourself in her symptoms list (Devin's Diagnostic). I sure did.

You have a lot of serious problems and it seems to me from your post that you're falling through the cracks... when that happens, a person has to become her own advocate. It's unfair to the max, because of course by the time someone falls through the cracks, she's in no shape to stand up and demand her rights--but you have to. Maybe taking the first small step will help; maybe if you can read a website and find some support, it will help you to take another step, and then yet another.

You do not have to accept misdiagnosis nor do you have to accept patronization and shoddy treatment from so-called "professionals." You have the right and also the duty to stand up for yourself. Your inner children need you to do this, no matter how scary it might be. Even reading a website is a positive action and will help, I promise, and all the small actions will add up and lead you to feel stronger.

I wish you the very best!

agiftofgrace said...

oops, I'm sorry, I guess those aren't live links.... but they are correct addies; I just pulled them off the webpages tonight.

Dyke Grrl said...

Thanks for the support, both of you. I'm working on a more coherent reply, but I seem to have used up most of my words yesterday.

I'm also working on processing your suggestions, agiftofgrace. Thanks for the links.

Anonymous said...

I just check in here once in a while. Sorry to hear you're having these problems and that the help you're getting isn't what you deserve. I have another friend with fibro, and she has found dealing with health care professionals as frustrating as dealing with the symptoms. It's outrageous. I think you deserve a lot of credit for dealng with your childhood rather than denying it and for asking for help. Sorry I can't offer more than that.

agiftofgrace said...

You're welcome, Dyke Girl. You're a strong and courageous person. My wish is that you find the help you're seeking, real help that makes a positive difference in your life--because it is so unfair that you should reach out for help and just be slapped down. I've been suicidal myself for most of my life... and yanno, the times in my life when I haven't been, oddly enough *she says EVER so drily* have been the times when my physical pain is under control. Imagine that.

Physical therapy for pain control made a world of difference for me. Is there a way you can try that? Truly, what made the most difference was Prozac, because it made me sleep properly (and without terrifying nightmares) for the first time in decades. I know you had a ad reaction to one med, but could they try another?

Aww sweetie, I don't know if any of this can help you or not, but I do so much wish that you will find someone who can honestly help you without making it worse!!! Good luck to you.