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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Article: How to Answer "What's Wrong With You?"

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 3, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. flybro

    flybro Senior Member

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    pluto
    and if you do not wish to waste your energy on the ignorant, judgemental masses,

    when the question...'whats wrong with you' is asked

    smack 'em in the chops and tell 'em its psychiatric, then plead diminished responsabilty in court, after all even the psychiatrists are on our side in that argument. LOL

    failing that start talking loudly in imaginary languages, then wait to see how long it takes to get moved to a more secluded part of the plane.

    Kudos on the pilot thing, I'm a flight sim enthusiast that loves trying to get a cessna down on the runway without smashing the virtual gear to pieces.

    Flight simming has helped me to preserve a modicum of sanity.
     
  3. Sasha

    Sasha Fine, thank you

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    I agree that the "what's wrong with you" question is stressful to answer - first because it's rude, and second because we have a stigmatised illness and giving a truthful answer could get a bad reaction (whether to our faces or not).

    I find it's very rare that I'm asked the question but if I am, in a context where I think someone is being reasonable to ask it (or it would involve too much aggro to deflect the question with something like, "That's a bit of a personal question"), I answer that I have a neurological disease and get tired very quickly doing very little activity (completely true - ME is a neuro-immune disorder). If pressed for the name I tend to say that they won't have heard of it.

    I don't think that strangers can be educated about the reality of ME by we strangers who have it in a brief encounter. I don't think there's any point trying to convince a stranger both that we're totally psychiatrically sound in the course of a 30 second conversation and that ME is a real disease (got ten hours and a laptop?).

    If it's someone we're getting to know it's a different story of course - I say I had a serious viral illness some years ago and that I didn't properly recover and still get extremely tired very easily. I don't name the disease unless I'm asked a straight question and then usually call it post-viral syndrome - if I'm asked if that's the same as ME, I say that it is.

    Roll on better days...
     
  4. Athene

    Athene Never give up

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    I have been through all this and got so sick of it that I often just tell people whatever lie suits my purpose at the time. I sometimes tell people I have AIDS (great reaction, do try it), sometimes MS. If I want to embarrass them I claim some complex colonic affliction and offer scatological details.
    I just reckon the other person should sometimes be the one who feels embarrassed, awkward and apologetic, not me.
     
  5. Forbin

    Forbin Forbin

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    Great post!

    [I just thought I would mention, off topic, that the scene you are remembering is from the first season of the 1978 TV series version of "The Paper Chase" (episode: "Great Expectations") starring James Stephens as Hart and not the 1973 movie starring Timothy Bottoms. Great reference, though. "The Paper Chase" is one of my favorite films! :Retro smile: ]
     
  6. Cort

    Cort Phoenix Rising Founder

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    Thanks Forbin. What a hilarious scene. I could easily picture it in the film. I agree - a great movie!. :cool:
     
  7. Stone

    Stone Senior Member

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    I have a friend who makes it easy for everybody. It's so simple, I can't believe I did't think of it. She simply lies and says, "I have lupus". Elegantly easy! People say, "Oh, that's a rough one. Would you like to sit down? That's so painful" and stuff like that. It works like a charm, but it's only good for relative strangers. For stranger relatives, not so much. But in general, she gets her needs met and her limitations accomodated with NO trouble at all. It's not like anyone's ever asked her to show them her Lupus ID Card. Personally it's not my usual practice to routinely just out-and-out lie, but I'm not morally opposed to it for others if the necessary end justifies the relatively harmless means and one is causing no harm to his fellow man. I guess it's a personal issue, which one must work out for one's self. :innocent1: But man, you should see how well it works for her. I was awestruck the first time I witnessed her employing her 'technique'. It was as if she said a magic word that opens doors and pulls out chairs as needed.
     
  8. Koan

    Koan Be the change.

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    I think I have the perfect answer for this question but I am completely mystified as to why I seem to have so much trouble just doing it.

    I don't think anyone is obliged to share the details of their medical history with anyone else, ever. (ok, medical settings don't count) It is only the understanding that we will be met with misunderstanding that moves us to feel we need to come up with a comprehensive answer.

    I have a neuro-immune condition and that's all I should ever (nearly) have to say about that. If it's pertinent, I can say I have a neuro-immune condition and I must... sit down, lie down, fall down, leave.

    We are under no greater obligation to explain the details of our condition than those with MS (nobody knows what that is either, they just think they do) Parkinsons, Lupus, etc., etc., etc. People may find "neuro-immune condition" does not completely quench their curiosity but that is not my responsibility. I am entitled to privacy and respect.

    Now, why is it that in reality I say: "I have a neuro-immune condition." Blank stare on the face of person to whom I'm speaking which I should take as a sign to move the conversation along indicating that I do not wish to explain further but I don't.

    "It's official name is Myalgic Encephalomyelitis." Blank stare.

    "Also known as Chronic Fatigue Syndrome" Light of recognition: Ahh! I had that once.

    And, I'm thinking: Why did I just do that again!

    :tongue:
     
  9. shrewsbury

    shrewsbury member

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    me too - "doh"
     
  10. Cort

    Cort Phoenix Rising Founder

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    Can anyone say 'chronic fatigue syndrome' to a stranger without a little shudder going through them? :eek::eek: I can't. Its ridiculous!
     
  11. dschlindwein

    dschlindwein not according to plan

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    I certainly can't say it without regret. It's tricky with the people who are somewhat close and therefore have to know that I have what I now prefer to call X-AND (or more simply XMRV) but who cannot possibly imagine how getting up from my bed can be so very hard to do.

    Again and again I make a resolution to NOT mention that I am ill to people who don't already know that I am, and just to say that I need to sit or lie down or whatever and not even talk about why. It's a little ego/no ego game that I'm trying to play with myself to see how comfortable I can be with letting a person think that I'm just a lazy slouch who doesn't clean her house or do her shopping or participate in her child's school events or her husband's social and work-related events or entertain the guests who are brought into the house by daughter or husband. I think I'm beginning to wear down my ego and gain some freedom.
     
  12. dschlindwein

    dschlindwein not according to plan

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    It's also nice to imagine that sooner or later CFS will be recognized as a real disease caused by a nasty retrovirus. It makes the whole thing just a bit easier to endure. Yeah, someday those folks will think back and remember that they once knew someone with that disease, and belatedly change their attitude to give me some latitude about my lassitude.
     
  13. Gerwyn

    Gerwyn Guest

    Chronic fatigue syndrome is a box we have been put into.It is not real.It has no scientific meaning.I see no reason why we should stay in this box.I simply say Myalgic encephalopathy.If then I am pushed I say a disease of the immune and nervous system.No word of a lie merely a rebranding excercise and relabelling our box
     
  14. Cort

    Cort Phoenix Rising Founder

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    Not a bad idea, Gerwyn. Since saying chronic fatigue syndrome doesn't work anyway - why do it?
     
  15. Stone

    Stone Senior Member

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    I'm trying to break myself of the habit of saying, "I'm too tired" or "I'm exhausted" when I'm in a flare and I have to explain why I can't do this or that or go here or there. It only promotes continued misunderstanding. I'm trying to remember that "I'm in a flare" or "I'm not feeling well enough" is what most people with other chronic illnesses say when they're too sick to do something. They don't always feel the need describe it as "too tired", even if that's what the problem is; they just say they're "not up to it".
     
  16. bigmama2

    bigmama2

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    ahhh yes what a wonderful question. i do enjoy it so much. so fun to say chronic fatigue syndrome and see in their face that that think i am lazy and or crazy. or its all because im fat. ya, all fat people sleep 18 hrs a day. right.

    i find the best answer for me is to say i have a neuro immune disease. if pressed i will say its called Myalgic Encephalomyelitis. (sp?) and yes like koan i will idiotocally sometimes explain that it is also known as chronic fatigue syndrome. shouldnta said that!

    i hate to lie, and am terrible at it, and feel it to be morally wrong - but i totally understand the cfs patients who lie and say they have lupus or aids. i am tempted to try this- but honey, you should see my try to lie- not pretty- ! it would be so great for once to see someone understand that i am actually SICK.

    sometimes i am tempted to say something absurd - beccause the whole situation is so frustrating. the absurd thing comes up when people ask the question "what do you do?" and i say that i am not working due to an illness- and they keep pressing about "what do you do about money?!" that 's when i just want to say "i'm a crack dealer- so back the he!! off!!"


    ehhhhh. the being misunderstood part of this illness is one of its toughest aspects!

    bigmama2
     
  17. Woody

    Woody

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    \

    I agree, a simple, but somewhat vague answer is usually best. I usually say, I have a chronic illness, then deflect. If they bring it up again, I tell them that I choose to focus on the positives, and deflect again. It works every time for me. Quick and easy even when the fog is heavy.
     
  18. Jayne

    Jayne Guest

    Even then I think it's pretty dicey...

    Most medical 'professionals' are quite the opposite regarding CFS/ME/FMS etc.
     
  19. dean

    dean

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    After many many years of having to deal with this I am beginning to sense an ever so slight change in people's response to my telling them I have chronic fatigue syndrome. I usually also add that the process is also called myalgic encephalomyelitis or ME. Of course it always depends on who I am talking to and for what reason. But when I am totally honest with people I am beginning to feel rather liberated. I feel like I am doing my bit.

    With a bit more exploration I find that many people are beginning to understand the situation in a better way. At least more people seem to think it is "real" as they say. Progress? Maybe. In any case I hope so. However I do understand that everyone with our friendly albatross has to deal with it in a way that works for them..
     

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