Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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how do you guys respond to the psychiatric accusations

Discussion in 'General ME/CFS Discussion' started by Aerose91, Jan 15, 2015.

  1. Aerose91

    Aerose91 Senior Member

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    I can't believe that at 2 years now I'm still getting psychiatric accusations, and from the same people who thought that since the beginning. I don't think my friends ever believed me that I had a serious illness and thought I was embellishing. They thought I would move back home, rest a couple months and be good to go. Now, 2 years later and much sicker they present it as "we say this because we care, we want to see what's best for you" and since I've gotten worse assume that that's proof of me being psychiatric.

    I've told them everything I can and will always offer to share all my medical records. The insult with comments like that runs deep and I'm flat out of ideas of what to say. Not to mention exhausted.
     
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  2. taniaaust1

    taniaaust1 Senior Member

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    Sorry but people who arent treating you respectfully and accusing you of lying or being all psychological, they wont change, types like that usually stay biased and even can still be doing so if one shows them doctors letters. You may need to unfortunately get rid of some of your friends.

    I used to have one friend who was convinced that CFS was a depressive illness.. and so would rock up at my door any time (very bad when I was needing to sleep in) and try to drag me out to things like the cinema when I was far too sick to go. She did talk me into it on one occassion as I did really miss getting to go out but then I regreted it for days after, it wasnt worth the after suffering. I ended up having no choice but making her another I distanced myself from to help protect me.

    The issue I had with that friend was unfortunately cause she had a close doctor friend who she asked about CFS as she wanted to help me..but her doctor friend told her CFS people were just depressed. So I had no hope of convincing her that her doctor friend said was wrong. I lost a good friend due to this.

    Ask yourself, is this friend good for me or not? If its more hassel or upsetting keeping the relationship then what you get out of it, let the relationship go.
     
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  3. daisybell

    daisybell Senior Member

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    @Aerose91 I totally get where you are coming from.. This happens to me too, and I struggle to cope with it. I don't have any good answers I'm afraid. The best thing I managed with regard to this is getting my husband and father to go to a conference on ME... That helped lots, especially with my father, but the effect hasn't spread much through the rest of the family!
     
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  4. A.B.

    A.B. Senior Member

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    If they hear from other people that it's not psychological they can change their mind. But if you personally insist on that, it will probably only reinforce the idea that you're in denial about your psychological problems. Some people will never change and the only solution is to end the relationship.
     
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  5. Snow Leopard

    Snow Leopard Hibernating

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    This must be incredibly frustrating, when you try to explain and they are unwilling to let what you say actually soak in.

    Some people are just really bad at both communication and sympathy.

    You can try to explain how you feel, that you don't appreciate being told by others how you should feel. There are methods for that. (I strongly recommend the book!)

    If that doesn't work, then there isn't much you can do but to move on and seek those who see you for who you really are and treat you with respect.
     
    Last edited: Jan 15, 2015
  6. adreno

    adreno PR activist

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    I would simply tell them to leave me alone, if they don't believe what I'm saying. I don't have to justify myself to anyone.

    They're either with you (helping) or against you (not helping). I don't need people who are not helping, I have enough to worry about.
     
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  7. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    sounds very frustrating! No one has accused me of being psychiatriatic, but people assume that since my condition isn't as well known as "cancer" or "MS" its not that big of a deal.
     
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  8. PeterPositive

    PeterPositive Senior Member

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    I've been thorough lots of that.
    At first I even thought it myself. The doctors suggested that, then people around me. None of their solutions has ever worked. Plus some of the people who were so much into the psychobabble had never seen a psychologist in their entire life.

    It turns out that relatively recently, 4-5 years ago, a relative and a friend of mine decided for different reasons to go see a psychologist (for their distinct problems) and were both dismayed by the lack of competence and bizarre ideas they were proposed. I won't go into the details but one of the two cases is a real horror story, the other is an ordinary case of incompetence.

    Even more recently I was able to help the same friend with lots of anxiety and insomnia with no talk therapy or other BS... simple set of harmless supplements in moderate doses. First I gave him links to scientific papers to read, then proposed him to try. Worked like a charm.

    Healthy people!... :rolleyes: Sometimes I think a 6-12 months of chronic illness experience would make them some good. It's cynical I know, but it would make them realize how exasperating can be to loose your ability to interact with the world for extended periods of time. And how easy it is to jump to conclusions about other people's behavior when you have no idea about what they are going through.

    Unfortunately I have never had patience with people having their own "interpretations" of my health issues and who didn't want to listen to my side of the story. Be it doctors, friends etc... I have lost some of them, not too many, but I don't regret it.

    Sorry ... not many comforting thoughts... :) Reading the posts above brought back some bad memories. :meh:

    Often times arguing is useless, plus it requires lots of energy :rolleyes:
    The more you raise your tone of voice, the more they think you're nuts. It's a lost cause.

    If people won't listen to what you have to say, they're probably not really interested in your well being, nor they really want to understand what is going on. They probably just want an easy answer, or that which they already expect.

    You should probably point it out, if it's people you care about.
     
    Last edited: Jan 15, 2015
  9. Aerose91

    Aerose91 Senior Member

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    You all make very valid points. Its actually people that I already have cut out for the most part but occasionally they pop up to check on me and when hearing I've only gotten sicker, it just reinforces their belief that I'm psychiatric because that's just not possible.

    I try to recite this quote to myself; " it's fundamental law that intolerance is the sign of poor education. The ill-educated behave with arrogant impatience"

    I am such a mellow person and things never get to me but for some reason I have sooooo much trouble moving past these accusations. To insult my character and integrity so deeply, and repeatedly, is something I have a lot of trouble just walking away from.

    I really do appreciate all of your opinions and help with this but I hate that you have input because it means you've all gone through the same.
     
    Last edited: Jan 17, 2015
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  10. SOC

    SOC

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    I generally take the position that people who want to comment negatively about my condition should do so from a position of knowledge or not at all. Anyone who starts in on me "knowing" what's wrong with me -- psychiatric issues, laziness, poor diet -- gets a pile of documents and a lecture. If you want to comment on my health, read this so you know what is actually going on. Then we can talk. If you don't care enough to learn about the illness, your opinion means nothing. It's a slightly more polite version of "Get some knowledge on what you're talking about or STFU." :p

    They go away with a pile of documents they never read, but at least they don't hassle me anymore. ;) The one person who tried to persist only got, "Did you educate yourself yet? No? Then keep your opinion to yourself. There's no point in talking until you know what you're talking about"

    Of course that means a fair number of the people go away with their documents and never come back, but clearly they were people I didn't need around me, so no loss.

    As for which documents to give them -- it hardly matters since they never bother to read them. :rolleyes: To give them the benefit of the doubt, though, I usually provide CCC, or ICC documents, maybe the ME/CFS Primer, or perhaps some other article that catches my fancy -- whatever's on my current ME/CFS reading stack. ;) I wouldn't worry about that, though. The goal is not to get them to understand. If they wanted to understand they'd have done some research themselves. The goal is to get them to shut up, which pointing out that they don't have a clue what they're talking about generally achieves.
     
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  11. SOC

    SOC

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    Pfft. I've learned not to take it personally. It's not about us, it's about them. They don't want to deal with the fact that an illness like this exists and it could hit anyone, including them, at any time. So they go into denial -- it's not a real illness, they're mentally healthy (yeah, right) so it couldn't happen to them because it only happens to the weak-minded, and anything else they need to think to avoid facing ugly reality. It's a sign of their mental weakness, not ours. I tend to feel sorry for the pathetic fools (when I'm not calling them ignorant idiots under my breath). But I also try not to be around them much either, because I have enough problems without having to deal with their nonsense.
     
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  12. PeterPositive

    PeterPositive Senior Member

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    The best of all, the one the gets the all-time golden globe is the "maybe, you don't want to heal" kind of assertion/joke, which some people, apparently intelligent, seem to believe. Some for a minute or two, just the time to make them realize the kind of idiocy they have just said, and others who seem to believe it entirely. :wide-eyed:
     
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  13. chipmunk1

    chipmunk1 Senior Member

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    Ask them if they are a psychologist.. If they answer no ask them why they believe they know better than you?
     
  14. worldbackwards

    worldbackwards A unique snowflake

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    If they answer yes, then you've undertaken CBT.
     
  15. Aerose91

    Aerose91 Senior Member

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    Actually one of them is a therapist which makes this so much more difficult. She thinks with that background that she knows more than my doctors I guess. Its like they have convinced themselves so deeply that part of this is psychiatric there's no reasoning
     
  16. Aerose91

    Aerose91 Senior Member

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    I like that idea- put together and "introduction packet" that they need to read and recite back to me before giving an opinion. Can I ask what the ME/CFS primer is? Never heard of that.
     
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  17. Aerose91

    Aerose91 Senior Member

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    One of my doctors did a cellular fatty acid test and compared my results with people who have Huntingtons, MS and ALS. The people with ALS were the worst, MS and Huntingtons had the worst demylination and I had worse mitochondrial membrane damage. She said that the neurological disease process of all if these are very similar with small differences in what they effect the most. I don't see them telling ALS and MS patients that their psychiatric.
     
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  18. Wayne

    Wayne Senior Member

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    Hi Aerose, I can certain empathize with your situation. Sorry you're having to deal with it as much as you do.

    After so many years and so many experiences, I've come to accept that a lot of people will never "get it". Given how unusual and complex our health issues are, I've even thought it may not necessarily be fair to expect them to. I've also come to accept that our culture often encourages castigation of those who have illnesses of "unknown etiology".

    My own solution is essentially two-part: Accept how difficult it is for healthy people to understand what we deal with, and how they're so heavily influenced by our culture (and our health care systems). And two: - forgive them. I now consider their lack of compassion for others less fortunate than themselves to be THEIR issue, not mine.
     
    Last edited: Jan 21, 2015
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  19. SOC

    SOC

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    ROTFLOL! That actually makes sense to some people? I've become intolerant of fools in the course of this illness. If someone said that to me, I have no doubt that before my politeness-brain kicked in I'd blurt out, "Seriously? You believe that? You think anyone would want to live like this if they had a choice? Do you also believe aliens crash landed in Nevada and the earth is flat? Did you even think about what you just said? Take a moment and go over that in your head. Does that really make any sense to you? If so, perhaps you should consider that maybe you don't want to be logical." :rolleyes:

    Then, not surprisingly, they'd get their feelings all hurt and stalk off. I'd be left standing there sighing, thinking, "I suppose I could have handled that better."
     
    Last edited: Jan 15, 2015
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  20. SOC

    SOC

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    ME/CFS Primer for Clinical Practitioners It's far from perfect, but it's much better than nothing. It has lots of medical-speak in it which makes an impression on those who think it's all in our head but can't be bothered to do more than glance at a document.

    "Why," you can ask, "do you suppose there's a document this thick for medical practitioners if it's all in my head? What section would you like to read first, the one about immune abnormalities, or the one about neuroendocrine dysregulation? Here, this section about autonomic dysfunction/cardiac abnormalities is quite interesting. Perhaps you'd like to start there?"
     
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