Fibromyalgia and Dr. Unbeliever: A Horror Story From Texas

@PaperBackChic on Twitter alerted the world to this story, which is linked to off the main FMS Community page.

I read it, and was appalled — you will be, too. (Or should be.)  I also have questions, but first, let’s recap.  From the page, which is titled “Fibromyalgia — A Horror Story,” we gather the following salient points — the names have been changed, according to the unnamed author of the piece:

  • Rita, the patient in question, has been diagnosed with fibromyalgia, a thyroid condition, and diabetes. She also has IBS (irritable bowel syndrome, which is often associated with fibromyalgia).
  • She approached the doctor in question (“Dr. Jones”) for treatment of the thyroid condition. However, Dr. Jones also knew about her earlier FMS diagnosis.
  • On an early visit, despite exhibiting some symptoms suggestive of cardiac issues, the doctor sent her husband to get an OTC medication. Yet when the husband himself showed up at another point sweating profusely, the doctor immediately ordered several tests (I’m assuming to rule out cardiac trouble).
  • The doctor told Rita that his best friend has ALS and that Rita had no right to “whine” about her problems, the clear implication being that ALS is a real disease but FMS … isn’t?
  • Despite several therapists and psychologists concurring that Rita had no psychological issues, other than the mild and occasional depressive episode that accompanies nearly all chronic pain conditions, Dr. Jones repeatedly insisted that Rita had some sort of psychological disorder. This insistence apparently was the primary focus of her visits with this doctor, instead of the thyroid treatment she had sought from him.
  • Ultimately, after an abusive visit, Rita lost her cool and said “Maybe I should stop taking my medications and die. Then maybe an autopsy would prove that I am sick!”
  • That was all the ammunition this doctor needed to have Rita held on a 72-hour suicide watch in a local mental health facility based on his insistence that she was bipolar and a danger to herself and/or others.

I won’t go into the horrors of that situation. Anyone with half a brain can imagine. All I can think right now is, “Here we go again.” But before I rant, a warning to all chronic pain patients — and a “Yeah BUT” to that warning, which is just as important — so promise me you’ll read both, OK? OK — here’s the warning:

If you say ANYTHING in front of a doctor that could potentially be interpreted as a threat to kill yourself, or harm anyone else — even if it’s said off the cuff, or in jest — you could be subjected to a hold just like Rita was.

Just don’t do it. Ever.  Now, here’s the Yeah BUT:

If you are feeling suicidal, you need to tell your therapist or doctor immediately and ask for help.

I hope that makes sense. Where Rita went wrong was in assuming that Dr. Jones would act rationally, even after his refusal to treat her for the problem she came to him for — the thyroid treatment — made it patently clear that he was not rational.

Rita should also have bolted the minute this idiot opened his mouth to denigrate her, or her condition. The second he didn’t at least make an inquiry into a possible cardiac issue with her symptoms.

Am I being too tough on Rita? No, not at all — I hope it’s clear to all that the problem here was Dr. Jones, not Rita.

But here’s the thing, friends: There are LOTS of Dr. Joneses out there, and they cannot be allowed to treat us. As soon as you know or even have reason to suspect that you’ve found an Unbeliever, you need to leave.

I know it’s unfair. It’s putting the responsibility on you, the patient, instead of (pardon me) the asshole who’s causing the problem.  You shouldn’t have to go find another doctor to treat you like a human being with rationality and respect.

But you do, and you must.

Guys — by which I mean ladies and gentlemen and children of all ages and their parents — we can no longer afford to mollycoddle these medical pretenders providers. I used to think the unbelievers were a small minority — a vocal one, to be sure, but small enough to ignore.

Then came the NY Times article questioning the “realness” of our very real disease. Then came another piece, this one by CNN. And now, with Rita’s story — with the story recently of a woman suffering from FMS who will go down in history as the first person in the UK with “fibromyalgia” as the cause of her death, all because her Dr. Jones thought she was crazy, too — well, folks, the conclusion is inescapable:

We are at war.

And it’s time we (by which I mean all chronic pain patients) started getting a little more assertive about our rights and our health.

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8 thoughts on “Fibromyalgia and Dr. Unbeliever: A Horror Story From Texas

  1. Maija Haavisto

    I know several people with CFS/ME who have been sectioned for being “mentally ill”, including my very severely ill friend who is in wheelchair – they say she could walk if she just wanted to (never mind that she has hundreds of abnormal test results, including muscle biopsies). She was fed psychiatric drugs that made her so ill that all touch and noise caused extreme pain. Luckily she recovered from that, I was afraid she’d die, especially since her illness is progressive, but of course the trauma will never go away. She already had PTSD caused by doctors before that experience. The same doctors who hospitalized her keept stalking her and abusing her. Just thinking about those psychopathic, sadistic monsters makes me extremely angry.

    Someone my friend knows was locked up in a psych ward for having Ehlers-Danlos syndrome. She, too, was told she could walk if she just wanted to, even though the problem was in her knees.

    There is nothing sick or abnormal about having suicidal thoughts, by the way. They are not necessarily a sign of mental illness. If you are feeling suicidal, often the worst thing you can do is tell a therapist or doctor.

    Reply
  2. Rochelle

    Wow! That is insane. I’m so angry and perturbed by what happened to her!!!! I agree, she probably shouldn’t have said what she said, but I don’t blame her and any normal doc would gently investigate with her, instead of jumping to rash conclusions and stupidity.

    I’m so mad! I hope Rita is able to get some real help and get past this situation. Wow, how traumatic!! Thanks for this lesson/reminder on being assertive and taking care of ourselves!

    Reply
  3. Sherrie

    Hi Maija — Thanks for sharing your friends’ stories. I would stress that I don’t know the legal provisions in your country (or any other country, or for that matter other states in the US than South Carolina, where I used to practice law), but that for others reading this, there may well be legal avenues of redress for egregious cases such as the one Maija describes. Don’t reject this course of action out of hand without speaking with an attorney in your jurisdiction. Perhaps if more than a few of us began challenging this behavior for what it is — gross negligence, if not willful assault and battery — then more physicians would wake up and begin to educate themselves and their staffs.

    However, I have to take extreme exception to your statement that someone with suicidal thoughts should perhaps not seek help. I believe there are extreme cases of chronic pain sufferers who, having sought help first, and having exhausted all treatment possibilities, should be allowed to terminate their lives without repercussions for themselves or anyone assisting them, but this isn’t what I was describing in the post.

    Suicidal ideation, even fleeting thoughts, should absolutely be communicated to an appropriate medical professional. That said, what constitutes an appropriate professional, in my book, is one who doesn’t fly off the handle and assume that the sole cause of all of the patient’s troubles rest in psychological bases.

    Rochelle: I totally agree. Who among us hasn’t said things in haste when in pain and faced with someone who so obviously doesn’t believe us? It’s like being denied our very right to existence, calling into question both our integrity and our sanity. Such statements should be seen for what they are, and not used as the basis for a thinly-veiled attempt to marginalize a “difficult” patient. That’s malpractice, as far as I’m concerned.

    Wealthy and Healthy: thanks for commenting! I’m so sorry something like this happened to you. I’d be interested to know how you dealt with the situation (though completely understand if you don’t want to share any further details publicly). We all really need to come together and support each other with concrete, practical suggestions on how to deal with medical professionals like the doctor in Rita’s story. What works? What doesn’t? It’s only by sharing our stories that we can figure that out.

    Still, it’s a huge step to share personal medical info online. I wonder if there were some way to collect these stories, maybe even using this site, and do it anonymously … hmm … that gives me something to think about!

    Thanks to all who’ve commented thus far on this story. It obviously touched a nerve with a lot of us. This is the kind of thing I’ll be focusing on in The Tramadol Diaries, the book.

    Reply
  4. Wealthy and Healthy

    I’m not sure if I can post links here to my blog, so if you look in the April posts, there’s a post called the unintentional suicide attempt.
    I am lucky in that my job requires me to stay calm and smiley even if I’m angry or upset, so I put my skills to work that day.
    It seems like if you show even a fraction more emotion than you ‘should’, you need mental help.

    I’ve found when dealing with doctors the best thing is to stay as detached as possible until you know you can trust them.
    I’m in the UK, so I’m not sure how the US medical system works comparatively.

    Whenever I talk to a new doctor, I tell them my symptoms, and what I’m doing in terms of pain management, then I ask if they have any more tips and hints for me to try. I also take notes with me of what I want to discuss and any issues I’m having.

    If I have to have a physical exam, and they want me to do something like for example turn my neck, I won’t do it if it is going to make me flare and I’ll tell them why I’m not doing it.

    As I go through my list, I take notes of what the doctor says and I won’t leave until I have an answer and I understand the answer.

    I watch them carefully to see if they are listening to what I’m saying and when they are talking to me, I listen carefully to see if they are being patronising, or suspicious sounding.
    For example when the doctor told Rita about his best friend, I may not have challenged him, as I’m not very confrontational, but I would have found another doctor.

    Most of the doctors I’ve seen and approached in the above way have been supportive as they can see that I’m proactive, taking my health seriously, and am making an effort.
    Once I had to see another doctor in my surgery as my doctor was on leave, and he was amazingly rude. He hadn’t looked at my notes, and assumed straight away I was pretending to be ill. He started to drone on about pain being all in the head. When I whipped out my pen and pad and started to write down what he was saying, he started to stutter and then started scrolling through my history. He realised that I wasn’t faking it and became a lot more friendly, but I still will not go back to him again.

    I don’t see why I have to be treated guilty until proved innocent. I pay their wages, and so I expect a decent and respectable service.

    It’s hard though, because they are the ones with the qualifications and it feels like we should always listen to them. However if the doctor in question doesn’t listen to me, or take the time to show basic manners, they can…

    When you’re in pain the last thing you feel like doing is all this hard work.
    What I will say though. is when you do it and find a gem of a doctor like the one I have now, you’ll realise how worth it is.

    Gentle hugs to all xx

    Reply
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