Does long-term, non-remitting mental illness need a psychiatrist?

Over at Vicarious Therapy, Aqua is really upset about an article by the Canadian Psychiatric Association. She says that it basically justifies dumping chronically mentally ill people out of the system.

I’m not sure I agree with her interpretation of the article, but I can see why she is offended. But I’m  not. I think they have a point. Maybe it’s just seeing things from the side of limited medical resources, how people with adjustment disorders and so-called mild crises can’t receive services. These are people who are easily “cured.” They would greatly benefit from a short time with a psychiatrist, whereas someone like me, well, all my time and effort has been a waste at best, and may have left me worse off than I started.

At some point, my shrink should just point out he isn’t helping/can’t help me and stop taking my money and time and giving me false hope.

I’ve been thinking a lot about that lately – that I need to quit going to him, but he insists that whatever voodoo he thinks he’s doing can help, so I keep going. At some point, it’s fraud. And it’s hard for me to give up, for obvious reasons –  who in my situation wouldn’t be a sucker for hope of a better condition, even a cure? But doesn’t he have some responsibility to just tell me what that article says? That I probably will never be well, probably will never be what I was with the ideal drug combo. Shouldn’t he be “emancipating” me at some point to learn to deal with this sub-par life?

It’s a huge issue in medicine – the public’s perception of what can be done (everything can be treated/cured, resuscitation on 95 year old grandpa is malpractice if he doesn’t live). But this time, I’m seeing it from the patient side. It is hard to accept that nothing further can be done, that I will probably never be alright again. But I thought we were moving away from the paternalistic view in which the doctor doesn’t tell the patient about the bad stuff, the bad prognosis, offering endless treatments to keep the patient hopeful and busy, when there’s really nothing that can be done.

And then, of course, in this case it’s complicated by the fact that shrinks get all wound up about failure too. As mentioned at the end of the article, not being able to fix me gets me tossed into “personality disorder,” which is a blame-the-patient stunt if I ever heard one. (The worst part: I almost believed it.)

So I do think the article has a point. (Though I highly disagree with the recommendation to send them back to their GP, as if family docs are a catchall system.) If a medical treatment can no longer help someone, doctors are obligated to stop providing it. It burdens the system, puts false hope into the patient, and is paternalistic. Why is psychiatry exempt?

On the other hand, I am starting to understand why people keep going to faith healers and alternative treatments for cancer. Sometimes they promise hope, when we no longer do. Is my continuation any different?

* * *

Here’s a Shrink’s Line of the Day in the same vein. Last time I was there, I brought up how one of the drugs, either the lithium or the Wellbutrin or the combination, was making me vomit incessantly. (Most likely a creeping-up lithium level, but I had no time to get it checked.)

The backstory: one of the completely unsuccessful new fancy drugs he put me on a few months ago caused, as a rare side effect (one that I did not know existed until it happened) massive hematomas on my whole body. I just wanted to quit the drug, since it wasn’t doing me any good anyway, but he insisted on sending me to a hematologist friend of his, who said she’d never seen anything like those bruises (the drug itself was too new for her to comment). So I ended up undergoing a massive clotting factor and platelet function workup (ristocetin, anyone?) which found nothing. Eventually I stopped the drug because it was useless, and one of those weird reaction reports was filed with the company. There were other cases on file.

At my last appointment, I mentioned the vomiting (I lost 2 kg in about 10 days). His line of the day: “Well, all these side effects, right out of the textbook, somewhere in your mind, you’re making an opening for your body to react that way, expressing your feelings toward the drugs.”

Isn’t that yet another phrase that is worth firing? Blame the patient 101. And I’d like to point out that I didn’t even know that the other could do bruising (neither did he, and the company only admitted it after it was reported). And I also pointed out to him that my great drug combo had worse side effects than any of these combined, but I never complained because at least I felt good.

I am scared that I will never be really ok again, back to where I don’t have to think about my mood every day, to being to where I can’t understand how I ever considered suicide, to where I’m not concerned with sleep and anger. But on the other hand, as more and more time goes by, maybe he should be transitioning to pushing me out and learning to live like this. I wouldn’t tell a new-onset diabetic that one day it would all go away; why should he be telling me the same?

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16 Comments

  1. *Hugs*
    He is definitely worth firing. Not at all practicing with your best interests at heart. First do no harm? He needs a lesson in patient centred care. You can’t go back to the combo that worked can you?

  2. Yes, it’s worth firing this guy, but that doesn’t condemn the whole field. I’d be pretty distressed if someone decided that I was worthless because one of my less-enlightened colleagues once told a patient her fatigue would improve if she dyed her hair (that’s a true story).

  3. Sara… I am just so wrapped and happy that you are writing again! havent read the post yet! gonna go read it. just happy you are here writing…
    love, Milo

  4. Sara, I think he is crazy to blame you for the side effects… or is it just a very smart way of not caring and blaming thing on you? it is just nuts. he really needs to get a life. once, i remember my neck got locked when i was taking Stelazine… scary stuff i tell yah!
    love, Milo

  5. Yucko-sucko!
    I just made that word up.
    Anyway, I think that both points are valid, if you take it in the appropriate context.
    There are obviously ways to improve your well-being, and if you can find both textbook (medical) and perspective (attitude/behavior) methods… well, it seems like it couldn’t hurt.
    Some of the best advice I’ve heard yet: Be your own case manager.
    If what’s happening isn’t working, keep looking for more ways to make you feel better.

    I don’t believe that the hopelessness that comes about from having no further treatment is worth it. I think we can keep moving forward, remembering that life is the journey– not the destination, making every alternative treatment yet one more step in the process.

  6. I’m not sure what I think about this, but it’s one I’ve considered before. I guess I can see both sides at different points, and my perspective does indeed shift somewhat based on how stable my mood is (or is not) at that time.

    On the one hand, towards the end of long-lasting depressive episodes I wonder, like you, if I will ever be okay again, if I will ever get to cease my almost obsessive monitoring of mood, where timing of medication and sleep does not rule my life. If I will ever fully engage with my work, my research, my friends, my family, my life. I wonder if I shouldn’t get off the medication carousel, quit the psychiatry crap once and for all, and just put my limited, miserable energy towards getting used to the idea of living – of existing! – like this for the rest of my life.

    But there is a small piece of my brain that recalls that there were two medication combinations that I responded to. Two sets to which my body and brain turned itself around and WENT BACK TO ITSELF for significant periods of time – one almost 2 years, one a little more then two years. And those after dozens of medication trials as well. And had I given up before then, I wouldn’t have had those 4(ish) years.

    Which begs the question – if I give up now, is that giving up my chance at possible future good years, maybe far more then 4? (Not sure how many medications there are left to try, but that’s a separate problem….)

    I guess that’s my main problem with the article. As hopeless as it feels to be wading around the psychiatric system with no success (and sometimes truly asinine doctors, like yours!), it’s still taking that small, tiny action against depression/other mental illness. To remove that possibility feeds into and increases a larger, amorphous sense of hopelessness, worthlessness, and despair.

    Though, (and I realize this post is quite incoherent and disorganized, sorry about that), I think a huge factor is the treating doctor, who should be able to realize when s/he is unable to help, and to either refer onwards, or at least discuss it with a patient. But, just because one doctor is incompetent doesn’t necessarily justify a general policy of dumping people with TRD, etc, from the mental health system.

  7. Wellbutrin gave me the best years of my life, and seemed for a long time like the silver bullet for my depression. If my mood worsened, I would take the drug for a few weeks, and then I’d be level again, and I’d go off of it for months and months at a time, and then the cycle would repeat.

    Dsythymia is historically difficult to treat, and yet, it’s miserable to live with. it erodes the will to live because it causes life to be reduced to shades of grey. What to do with such a patient? Drugs are not likely to work, but what about psychotherapy? If you’re ready to give up on psychiatry, then at least, I say, don’t give up on having some sort of mental health professional help like a good therapist.

    You’re a smart woman, so you’ll know when to leave your psychiatrist, and don’t need anyone else to tell you what you already know.

    I believe that answers are out there if a person is willing to look hard and long enough for them. When I volunteered at a small animal vet clinic, I saw a lot of cases that weren’t necessarily fatal if the vet had the ambition to send the dog or cat to a referral hospital at a university. Instead of admitting failure, she instead chose to let the animal die. She justified it to herself that the animal wasn’t worth the money, but that wasn’t her decision to make.

    Go to UPenn, go to John Hopkins, go to UCLA, go to Stanford, it’s worth your life.

  8. Hi Sara,
    I understand what you are saying about the limitations of medicine, but I disagree that you should be blamed for your situation, or made to feel your situation is hopeless. A good psychiatrist provides hope and supportive psychotherapy to help you survive when things aren’t going well. They may not have the solution, or there may not even be a solution, but they will help you either accept and learn to live with your illness, and they will keep trying to help. Can you imagine how many chronically mentally ill people would commit suicide if it was otherwise? I would be one of them. Instead, my pdoc read my blog and called me last night to see if I was okay. I was embarrassed, but thought is was pretty damn caring for him to reach out to me when I wasn’t calling him asking for help. That is what a good pdoc is like. He’s a good man, and the reason I manage to survive and keep trying. I really wish you could find a more supportive and compassionate pdoc. You deserve to be treated with respect and kindness.
    hugs,
    …aqua

  9. After pulling a 30 hour shift while puking and shaking, this morning I finally called the shrink today after and told him to get me some other names.

    Also, I firmly believe the best doctors aren’t those with big names – the ones at the major centers are research people who hate patients. For anything, unless you have truly something rare, it’s best to find a good doctor in the community.

    And I never had anything dysthymia-like until the lithium. That’s what it feels like it has done to me. It’s killed all my happy. My productive hypomanias (before I get argumentative and annoying and extravagantly expensive…)

    And I ordered myself one of those huge psychopharmacology books to see how to fix this for myself. That’s what Jake my friend told me to do at the beginning, which sounded irresponsible sort of at the time, but a year later, I’m thinking he’s right.

    And yeah, the idea was for a real psychopharmacologist for a consult, not to cross over permanently. But the guy he recommended is an idiot (he is a consult guy at one of the hospitals I worked at and I am definitely not a fan, not to mention the awkwardness). I told the guy today to give me a different referral, that it doesn’t matter to me to go out of the city to the major city an hour and a half away.

    At first when I recommended the idea a month ago or two, he got sort of offended, but then he came around and thought it might be a good idea. Drug treatment isn’t his thing, as I’ve mentioned in a post about another patient of his who I treated. But I looked the guy up, and he does do a lot of “biological psychiatry” but it’s mostly research on genetics and mental illnesses. He’s not an official psychopharmacologist. Now, I’ve said again and again that I don’t think credentials matter a lot in medicine…but still.

    And do I really need another man telling me what to do?

    Wellbutrin was really good for the depression, but it gave me panic attacks, something I’d never experienced before. I am going to raise the idea of taking maybe like 1 Prozac a week with it to just tone it down a little. That seems reasonable. (Of course, I haven’t yet received my huge psychopharm book.)

    Sarah – this is a really good point. The thing that can still almost get a tear out of me (I’m too drugged to really cry) is the thought of my four good years, the thought that I may never go back to being that ok. And at this point, I’m not sure if it is more blessing or curse to have known true health. Now I know what I’m missing.

    Today I’m after call. I slept all day, but I still feel ill. Would really like to call in sick tomorrow. I have never called in sick. I keep having the feeling lately that one day to stop running would help me a lot. Do I dare?

    Thanks to everyone for the comments.

  10. After pulling a 30 hour shift while puking and shaking, this morning I finally called the shrink today after and told him to get me some other names.

    Also, I firmly believe the best doctors aren’t those with big names – the ones at the major centers are research people who hate patients. For anything, unless you have truly something rare, it’s best to find a good doctor in the community.

    And I never had anything dysthymia-like until the lithium. That’s what it feels like it has done to me. It’s killed all my happy. My productive hypomanias (before I get argumentative and annoying and extravagantly expensive…)

    And I ordered myself one of those huge psychopharmacology books to see how to fix this for myself. That’s what Jake my friend told me to do at the beginning, which sounded irresponsible sort of at the time, but a year later, I’m thinking he’s right.

    And yeah, the idea was for a real psychopharmacologist for a consult, not to cross over permanently. But the guy he recommended is an idiot (he is a consult guy at one of the hospitals I worked at and I am definitely not a fan, not to mention the awkwardness). I told the guy today to give me a different referral, that it doesn’t matter to me to go out of the city to the major city an hour and a half away.

    At first when I recommended the idea a month ago or two, he got sort of offended, but then he came around and thought it might be a good idea. Drug treatment isn’t his thing, as I’ve mentioned in a post about another patient of his who I treated. But I looked the guy up, and he does do a lot of “biological psychiatry” but it’s mostly research on genetics and mental illnesses. He’s not an official psychopharmacologist. Now, I’ve said again and again that I don’t think credentials matter a lot in medicine…but still.

    And do I really need another man telling me what to do?

    Wellbutrin was really good for the depression, but it gave me panic attacks, something I’d never experienced before. I am going to raise the idea of taking maybe like 1 Prozac a week with it to just tone it down a little. That seems reasonable. (Of course, I haven’t yet received my huge psychopharm book.)

    Sarah – this is a really good point. The thing that can still almost get a tear out of me (I’m too drugged to really cry) is the thought of my four good years, the thought that I may never go back to being that ok. And at this point, I’m not sure if it is more blessing or curse to have known true health. Now I know what I’m missing.

    Today I’m after call. I slept all day, but I still feel ill. Would really like to call in sick tomorrow. I have never called in sick. I keep having the feeling lately that one day to stop running would help me a lot. Do I dare?

    Thanks to everyone for the comments.

  11. For some reason, this comment isn’t going up.

    After pulling a 30 hour shift while puking and shaking, this morning I finally called the shrink today after and told him to get me some other names.

    Also, I firmly believe the best doctors aren’t those with big names – the ones at the major centers are research people who hate patients. For anything, unless you have truly something rare, it’s best to find a good doctor in the community.

    And I never had anything dysthymia-like until the lithium. That’s what it feels like it has done to me. It’s killed all my happy. My productive hypomanias (before I get argumentative and annoying and extravagantly expensive…)

    And I ordered myself one of those huge psychopharmacology books to see how to fix this for myself. That’s what Jake my friend told me to do at the beginning, which sounded irresponsible sort of at the time, but a year later, I’m thinking he’s right.

    And yeah, the idea was for a real psychopharmacologist for a consult, not to cross over permanently. But the guy he recommended is an idiot (he is a consult guy at one of the hospitals I worked at and I am definitely not a fan, not to mention the awkwardness). I told the guy today to give me a different referral, that it doesn’t matter to me to go out of the city to the major city an hour and a half away.

    At first when I recommended the idea a month ago or two, he got sort of offended, but then he came around and thought it might be a good idea. Drug treatment isn’t his thing, as I’ve mentioned in a post about another patient of his who I treated. But I looked the guy up, and he does do a lot of “biological psychiatry” but it’s mostly research on genetics and mental illnesses. He’s not an official psychopharmacologist. Now, I’ve said again and again that I don’t think credentials matter a lot in medicine…but still.

    And do I really need another man telling me what to do?

    Wellbutrin was really good for the depression, but it gave me panic attacks, something I’d never experienced before. I am going to raise the idea of taking maybe like 1 Prozac a week with it to just tone it down a little. That seems reasonable. (Of course, I haven’t yet received my huge psychopharm book.)

    Sarah – this is a really good point. The thing that can still almost get a tear out of me (I’m too drugged to really cry) is the thought of my four good years, the thought that I may never go back to being that ok. And at this point, I’m not sure if it is more blessing or curse to have known true health. Now I know what I’m missing.

    Today I’m after call. I slept all day, but I still feel ill. Would really like to call in sick tomorrow. I have never called in sick. I keep having the feeling lately that one day to stop running would help me a lot. Do I dare?

    Thanks to everyone for the comments.

  12. Do it!

  13. What part of the country do you live in?

  14. BTW,
    Even a steady drip of water will wear a hole in a rock!

  15. I think a change is in order. To suggest that side effects are psychological in origin could lead to some dangerous side effects going ignored. And certainly is not very validating or skillful. I would imagine that that can’t feel good.

  16. I am no longer sure where you’re gedtting your information, however great topic.
    I must spend a while learning much more or figuring out more.
    Thank you for great information I was lookingg for tthis information foor
    mmy mission.


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