Tuesday, April 24, 2007
No more 'I love yous'... the language is leaving me...
Another batch of medical records arrived in the mail today. To my already fairly comprehensive list of misdiagnoses listed below, I can now add autism and, even more curiously disintegrative psychosis, a.k.a. Heller's Syndrome or Childhood Disintegrative Disorder (CDD). This condition is described as an especially malignant, delayed-onset variation on autism, such a that a child with CDD appears to develop normally for the first 2 - 10 years, only to undergo a sudden regression that often results in severe mental retardation. Ironically enough, I am at a loss for words.
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15 comments:
As Annie Lennox said,
"Everybody was being real crazy
The monsters are crazy
There are monsters outside"
But seriously, autism? Was the doctor too lazy to randomly flick through the DSM and just started at "A"?
"But seriously, autism? Was the doctor too lazy to randomly flick through the DSM and just started at "A"? "
I can't help but find this humorous.
You've inspired me to hunt down all my psychiatric records from hospital stays. Today I made a list of phone numbers to call as soon as the time on the west coast turns business hours. I tried to get my records years ago and was refused. I don't think they can refuse anymore, by law...I just have to hope they are still in existence. You write in the post above about Borderline Personality Disorder. The only way I could have escaped that diagnosis is because it hadn't become a fad at that point. None the less I won't be surprised at all if it's in my files. I certainly did a lot of "Bitch Pisses off Doctor" as well as all the rest of the staff.
I could remember 4 hospitals I stayed in. We'll see if I get them. I have no idea what my reaction will be to the trash they will inevitably contain.
Hi Gianna - based on my own experience, I should urge some caution in doing this. It can be incredibly distressing and painful to read this stuff - hundreds of pages of what may basically amount to gossip, name-calling, and the most bizarre interpretations of your behaviour imaginable. They can't even get the most basic things right - in this latest batch, my hair changed colour twice (in the absence of any products containing peroxide), as did my sister's name. And that's before they really get to you, and you do go crazy, and then you have to read their descriptions of that. Unless you have the hide of a politician, the fallacy of "They said I was a bad person, therefore I am a bad person" will always exercise its seductive pull. The fourth time round I was prepared for it, and it was little more than like the sea rushing back out between my ankles, but after reading the first lot I was totally emotionally and physically wiped out for a couple of days. I sat in my psychiatrist's office bawling my eyes out and saying 'How can they do this? How can they write this kind of stuff about a kid?' over and over again.
I'm not saying no, don't do it, but I wouldn't want to see your medication withdrawal etc compromised. If you decide to go ahead, please tread carefully. Will email soon. R.
Ruth,
Thanks for your concern. My husband had similar concerns. I think that since it was between 18-22 years ago that perhaps some of the sting will have lessened? I guess I don't really know. What I know is I really want to see them.
In any case I called 4 hospitals...there is actually one more from just about 4 years ago, but I don't remember the name of it and have to do some hunting (I didn't even need hospitalization this last time--I simply didn't have a local doctor and my insurance didn't cover anything in state so it was suggested I go into the hospital for med maintenance. It was insane of me to go. 18 yrs had passed and I had been a social worker in mental health--I figured my problems in the early years might have been mine. Jesus, did I find out otherwise. They didn't give a shit that I was a social worker and I was treated with great condescension--it was humiliating everyday and I was mature and completely sane and lucid. Yesterday I forgot about that stay. I was thinking about the distant past. It's this stay that might be the most interesting and also might have the most bite, since I wasn't even ill, but was treated like shit. Kinda makes you wonder why I didn't think of it? Perhaps I knew it could be traumatic.
Anyway...I don't think I'll heed your advice. I may be a masochist, but I just have to see.
Oh--the old hospitalizations--some of them may not have records anymore--perhaps all of them. They all said 10-20 yrs. They could be destroyed already.
It sounds from my last comment that I think that if one is "ill" they might need hospitalization. I don't feel this way though. No one needs the scorn and humiliation of a hospitalization, regardless of how "sick." Hospitals are a sickening experience--I mean that literally--they make one sick or sicker.
Gianna, my state (Texas) has an exception clause when it comes to releasing mental health records. The psychiatrist can deny the records if they believe it would harm the patient to read them (so you can imagine they use that excuse quite a lot to get out of sending them). I got around this by having them shipped to a therapist I know and trust. (That, they can't refuse). She turned them over to me. Ruth is right when she says to be careful. It's hard not to personalize some of the mean things my psychiatrist said. But, I completely identify with your need to know. In the long run I think it was helpful - it certainly made me realize once and for all what a complete asshole he is.
anon,
I think that that exception clause may have been what they used approximately 18 years ago when I tried to get the records. I don't know if they would still use that now. Most of my hospitalizations were in CA...I suppose they might still pull that on me if the law still remains. The last hospitalization was in Georgia--I was not living there--I don't know the laws. Anyway, thanks for you comments and experience.
I'm ready to start cringing. And I know I will. You two have scared me a bit--I'm afraid I'm being stubborn and absolute about wanting to know.
My records measure over a foot high and that's just one decade, I too live in TX and did the cajoling, horse-trading and "I swear I can handle it" maneuvers to get to the secret files, then I got ahold of them all when I got a lawyer to fight for my disability. They do the legwork and then give the client the paperwork upon request, what a treat.
I agree you must be careful reading them, the misogyny comes on strong, and a feminist analysis helps. There's also a lot of short-hand that I still can't make head nor tails of, and it can get tiresome wading through the clinical crap for the single, human reaction. The closest my last doc came to it was "complex woman = complex meds."
Meh.
Having said that, my records from the half-way human docs have helped me to take things more seriously, reading lots of commentary about "significant abuse" "intense psychic pain," and the words "monitor carefully, suicide risk" over and over, when I had no idea at the time I was in such distress, or I should say, that such things were noteworthy. I've broke down for days after a night of reading them, but in time, overall it's made me more cynical, attentive and self-pitying, hooray.
well, I had my records sent to my therapist, just in case they wouldn't send them to me. I got a hold of records from three different hospitals today comprising 5 hospitalizations. Some of the earliest hospitalizations were already destroyed. The two stays I was most interested in were not included, though I have one more hospital possibly coming.
In any case it wasn't as distressing as y'all warned it might be. It wasn't pleasant either.
I actually had a good belly laugh when I read, "attractive young woman presents with startling bleached orange hair."
Something that bugged me that had nothing to do with me in particular was how in every admit my looks were referred to. Early on I was in each case "the attractive young woman." The last hospitalization I was simply "obese." I guess I lost my attraction when I got fat.
Otherwise the records were just really slim. I only got actual hand written notes from one doctor from one hospitalization. She was clearly a narcissistic bitch and I vaguely remembered her when I read the note she made that I told her I thought that she had become too emotionally involved with my case and that was why she was not releasing me. That made me laugh too--I remember telling her that--but I would never have recalled it had I not read the records--I'm quite sure she was NOT emotionally involved now--she was a cold control freak instead. She called me manipulative in each daily entry at least once.
Anyway...so much was missing. All the horrible abuse on the floor was not even mentioned. Being carried by my arms and legs to the restraint table for instance--or the time they left me in isolation on the restraint table until I had to pee myself. No note of any of that. Only one obscure reference to my being restrained. "the patient was marginally in control of her behavior on admission...control was lost on the afternoon of Dec. 11 at which time the patient required 4 point restraint until control was regained." what the fuck did I do? I guess context doesn't matter to them.
It's a mystery along with all the other times I was restrained and it wasn't even mentioned.
Well, I have to say too that it was sobering to have my psychosis thrown in my face all these years later. I was indeed fucked up. It's a bit scary. Unfortunately no one wrote anything remotely insightful or helpful. I guess I'm lucky that they didn't say anything terribly difficult for me to read either. But again, I didn't get doctors handwritten notes and I imagine they probably left those out for a reason. I had some really nasty ass doctors. All I got were typed admit and discharge reports. Bare bones.
Well...I might get one more set of records...I'll let you know.
I have to add...I just read these a couple of hours ago and it's still sinking in...I do have a general sickening feeling in my gut. To be described in such cold clinical terms when I was in obvious critical distress is more than just a little disturbing. I think it may sink in more later. I read them all really quickly in an impulsive manner in my therapists parking lot right after therapy and then drove home. I haven't really sat with the feeling and I suppose I will read them over again slowly when I have the stomach for it. The truth is, I don't want to read them carefully because I am disturbed. It was all such a terribly scary time...I'm developing a sinking feeling that I haven't really processed them at all. I'm kinda hyper at the moment and I don't really feel like I'm in my body. A bit of dissociation perhaps?
I had a very creepy dream last night. I imagine it was the result of getting my records, though it was about my outpatient doctor of 10 years. The one who got me all liquored up on all these drugs. I loved him when he was my doctor. He was always "good" to me. Believed in me, in a fucked up sort of way--told me I should go to medical school and become a psychiatrist--how in hell he thought I could keep the long hours demanded in internship and residency on 11 mg of Risperdal and 4 other sedating drugs--how I could function when my cognition was so impaired--it was all a lie to keep me happy with him--an ego trip he was putting on me. I knew I couldn't do it--it was cruel to make such suggestions-- when I got married he told me I should have a baby. Forget that the drugs would probably produce a deformed or retarded baby. He insisted none of them were particularly toxic.
I've been angry with him for the last year, since I had my realization of just how fucked up even the most seemingly well-intentioned doctors are.
But my dream has truly left me sick to my stomach. In it I was searching him out. I wanted to be his friend. I have in real life made an attempt to tell him, through email, what I've managed to do so far. Get off more than half the crap he put me on and he responded with a one-liner. "Glad you're doing good." This is a man who when I left the state told me to stay in touch and that we could be friends. I've wanted to tell him what he's done to me, but I haven't known how and I'm really too bruised to let him have it. It's probably completely misguided to even have such a fantasy.
Fuck him. God, he was the worst of the bunch. He smiled the whole time he was poisoning me and fed me lines to feed my ego--which served only to make me beholden to him. He acted like an encouraging older brother who had no idea what the drugs were doing to me, when he had no excuse to be so ignorant. That I could barely function--I went out on disability repeatedly, taking three months off work every year and a half or so because the strain would get so debilitating. All I could do was go to work and then straight to bed. I had to get 12 hours of sleep in while holding a full-time job because I was so drugged up and I had a 2 hour round-trip commute. Sleep and work. How in hell did he think I could take care of a baby. He pretended that he had faith in me. If he had actually listened to how much I struggled he should've known that having a child would be an abuse to that child.
I feel rage now. He, the man who "believed" in me, has hurt me the worst because I trusted him. I never trusted the out and out assholes. And the worst part is that I still have, underneath the sickness I feel right now or actually contained within it, a feeling of warmth for him. Ugh it's repulsive. What is the name of the syndrome that makes one attached to their abusers--maybe I'm thinking of kidnappers.
I'm sorry if this doesn't belong here. I just felt I had to write about it and I didn't want to put it on my blog just now. And I do think I dreamed of him because of getting the records.
Ah...yuck.
These "medical" documents are words on peices of paper, they are not you, the words do not represent you. They are interpretations of reality from your jailors. Don't let their definitions stick to you or effect you, unless (you think) what they describe was reality.
I was hospitalized in Oct 2003. I know it has been a long time, but I am still so angry! I was held like a prisoner. I've never been treated so disrespectfully. Does anyone out there know how I/We can fight this kind of treatment? I am open to any suggestions.
hey there Anon--
2003 doesn't seem long ago to me at all. My most humiliating experiences were close to 20 years ago and I'm still angry.
There are groups that fight for human rights in mental health, but at this point I do my bit by writing about my experience and sharing with others.
be well.
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