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ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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Who to Tell, How to Tell?

Discussion in 'Lifestyle Management' started by Sophali, Jan 22, 2013.

  1. Sophali

    Sophali

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    I am headed back to my children's charter school tomorrow (we homeschool - my husband does), but I attend the school with them because I like to chat with the other moms, and I want to be there for my kids. It is taxing energetically for me - but it's the only thing that I do. I have a new patch of acquaintances from this group (we started in the fall), and I've hinted at having health issues but never really said what it was. They go on a lot of field trips and plan tons of activities that I usually decline, due to my work from home schedule - but in reality, it's because I wouldn't be able to work or function for several days afterward. I don't want to open the can of worms, but I don't want to go on looking like a mom who doesn't care or someone who isn't interested in being involved.

    Who have you told and how/what have you told them?
  2. Hugocfs

    Hugocfs Senior Member

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    Hi Sophali,

    I have told my boss and some close friends, and of course my family. Basically only people who had to know or who I could trust and knew would understand. Because of the stigma attached to this disease, I have been careful. If you don't see any definitive upside to telling someone at the school, I would play your cards close to the vest. Don't feel guilty about not providing any personal health information. This is just where you are now, and yours is no disgrace.

    BR,
    Hugo
    Jarod likes this.
  3. Sophali

    Sophali

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    Thank you for the reply - that makes a lot of sense. I worry about people understanding but so few would. Even good friends.
  4. SickOfSickness

    SickOfSickness Senior Member

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    I agree about not telling, but I hope you can figure out some good excuses to tell them. I think otherwise they would start assuming those bad things :( People need to have some reason to fixate on.
  5. caledonia

    caledonia

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    I tell people on a need to know basis. It's probably ok to make up something vague like "health problems" or whatever.

    Sometimes I'll say I have ME/CFS, it's similar to MS. People seem to get that right away - that it's serious, it makes you feel bad a lot, it's not going away, and it's not something they can give you treatment advice about. If they ask what it stands for, I use the long name - myalgic encephalomyelitis.

    It probably better to avoid using chronic fatigue or chronic fatigue syndrome, as this invites people to say, have you tried this, have you tried that, or think it's all in your head or whatever image people have in their minds already.

    Anyway, it's good to have a little "elevator speech" already rehearsed for when the issue comes up.
  6. ukxmrv

    ukxmrv Senior Member

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    If it's not work related I usually tell people that I have a neurological disease and if I get to know them a little better that it is uncertain and flucuates.

    They are usually curious but I stop the questions after that. Although I do try to raise awareness about ME in other ways I chose carefully where that will be due to the prejuidice about the disease.

    It's really sad that you are missing out so much here. No way around it of course but doubly sad that you are missing out and that you don't feel comfortable about telling the truth. Quite understand why of course.
  7. WillowJ

    WillowJ Senior Member

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    I tell people generally, but most people have already dropped out of my life who wouldn't be able to cope with this, except some relatives who have never treated anyone with respect anyway and I have learned how to keep space between me and them. (I cannot go out much anymore, so I don't have many opportunities to talk about it/much need to explain, anyway)

    I do try to use both Myalgic Encephalomyelitis and cite the World Health Organization for this name, and Chronic Fatigue Syndrome with a parenthetical lighthearted note that it's a useless name which doesn't explain anything or tell anything about the disease, and depending on time/context mention vague criteria/misdiagnosis of people with random conditions that doctors think might be similar for one reason or another. (not everybody will like this strategy or find it suitable for them. For me I often find it empowering. I do not do the same thing every time, however.)

    Depending on time/context I have other planned things I might say. It's better to have some planned things. For me I'm not good at remembering or thinking of things 'on the spot'. Especially if I feel nervous or pressured or if I'm standing up or not in a good chair, or have been walking recently.

    However there are times when I don't say anything, or say something vague. "A neurological disease" or "A neurological and immune disease" will do fine, if you want to explain without being specific. If they ask what, feel free to say that it isn't relevant.

    And as the others have said, some people choose to not tell most people.

    Your choice will depend on your circumstances and your experiences. Whatever you choose to do is fine and you will have a sympathetic ear here.
    SickOfSickness and Sophali like this.
  8. peggy-sue

    peggy-sue

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    I call it ME. I'm not ashamed of it, I do tell folk about it and I think folk do need to speak out about it.

    But that's just me. ;)
    When I see an emperor wandering around with no clothes on, I say so, loudly. I always have.
    It gets me into trouble. It always has.
    I don't care. I never have. :p
  9. Jarod

    Jarod Senior Member

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    I've struggled with this for a long time. I used to never tell anybody about CFS.

    However, I can't hide it any more.

    I starting telling people I have dizzyness issues. Most people seem to get that immediately and it doesn't seem to create any stigma.
    SickOfSickness likes this.
  10. Shoesies

    Shoesies Senior Member

    I have only told very close family members. Most do not understand exactly what it is...but Dr. Bradstreet says it is an immune dysfunction. I am good with that. Explaining infections, coinfections and virus load is too complicated and most zone out. Everyone I have spoken with has advice about how I can "fix" this illness. People have no freaking idea what they are talking about. I pray those you choose to share with respond the way you wish them to...I have not found this to be true in my case.
    redrachel76 likes this.
  11. peggy-sue

    peggy-sue

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    If folk don't respond well, I can use this as a short-cut to dismissing them.:p

    Perhaps my being outspoken about medical stuff comes from being a non-practising alcoholic
    (I am not "recovering" - what a stupid notion. I'm an alcoholic, I just don't drink any more.)

    and from having had clinical depression before.

    I've been outspoken about those too - if you say you don't drink, folk think you're weird.
    If you say it's because you're an alcoholic, they're far more understanding.
    And depression is real and vile and is something else which suffers from being swept under the carpet.

    None of these are things folk should be ashamed of.:angel:
    redrachel76 and WillowJ like this.
  12. CFSsince2002

    CFSsince2002

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    I am really glad for those who have the emotional strength to tell people the truth, because the public will never understand the disease if we don't.

    I'm not there yet, however, and I fear that saying "health problems" is too mysterious because it leaves people up to their imaginations, so I say I have a rare heart problem that won't kill me but hampers my energy. That way they know it is serious when I say I can't make plans because I don't know when I'll feel well, or if I suddenly get tired. It also explains my use of a wheelchair and my occasional use of a heart monitor.

    [Dr Paul Cheney had Diastolic Dysfunction, a heart problem that's only been diagnosable with the advancement of medical equipment, like the last 15 yrs. He thought it was very close to what CFS/ME feels like; and Diastolic Dysfunction won't kill a person (like systolic dysfunction can), it "just" fatigues them. I tell curious people that there's no cure yet because it's still so new a condition, but I don't know if that's true.
    Valentijn likes this.
  13. Snowdrop

    Snowdrop Senior Member

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    The issue of whether to tell is really a difficult one. I was in your position 10+/- years ago.

    I didn't tell any one that I was ill, although at the time I did not have a diagnosis either.

    On thinking back on it I would suggest maybe waiting to see how relations with the other parents develop and perhaps pick one parent who you have come to trust and tell them and provide some info for them. Perhaps they can run interference for you with the others.

    Don't feel pressured to disclose too soon. People will think what they will regardless ~ ignore it.

    But developing one solid relationship might help.
  14. alex3619

    alex3619 Senior Member

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    Until the last few years I told everyone. Some years ago I was telling them CFS. I then got hit with the "you look fine" or "everyone gets tired" or "you just need to exercise more".

    Some years ago I started trying ME. When my local doctor asked me what that was, and the hospital changed it to CFS, I realized that it doesn't often go over well.

    I have tried "many different disorders including ..." and listed the non-ME things. I have tried a neuroimmune disease. People just get baffled when I say that. I have tried other things, but alas with my ME brain I can't recall all the variations.

    I have still not found a good label/explanation. I am still looking. I think all of these things can work in the right context, but its hard to figure out what that context is.

    We need a biomarker or something objective. There are tests now that show objective problems, but most people can't get access to those tests, and most docs never refer anyone for those tests. These tests are typically expensive, difficult to find places to run them, difficult to get referrals to, and in the case of 2 day CPET I think it would be a bureaucratic nightmare to get it done unless a local center does it. The 2 day CPET is probably too much for severe patients anyway, and impossible for the very severe. Even a moderate patient might relapse after a 2 day CPET.
  15. SickOfSickness

    SickOfSickness Senior Member

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    :(

    We are also discussing it here: http://forums.phoenixrising.me/index.php?threads/name-change-for-cfs.26651/#post-406928

    I agree :confused:
    peggy-sue and WillowJ like this.

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