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Do you tell people you are sick?

Discussion in 'Lifestyle Management' started by Tulip, Apr 19, 2011.

  1. Tulip

    Tulip Guest

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    Or do you keep it to very close family and friends?. I don't tell anyone, my neighbours have no idea, my sons school, no one like that. If people ask how I am, I am always "good". I learnt very early on that people just thinks it's "fatigue" and everyone has a remedy you should try and if you haven't gotten better with that remedy, they get the poops with you, so now I say nothing at all. I think most people think I don't know what I want to do with my life or something like that, and that's why I don't work, but really I don't care!. It's my secret :cool:
  2. pamb

    pamb Senior Member

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    We do tell people my husband is sick - but I agree with all you've said and often think we'd be better off just not saying anything and let them think what they will. It is sad, but between the media and the CDC the perceptions of CFS are such that people could not think much worse of John if they knew nothing.

    Having said that, now that John is clearly very ill, which was not the case for his first 7 yrs or so, by saying he has ME/CFS we have the chance to educate that yes, people really do get very ill with it. The difference is it is no longer invisible with him, as it still seems to be with you.
  3. Tulip

    Tulip Guest

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    No I am quite sick, but I have learnt over the years ways to get around that, like laying low and when I do go out to "hide" the sick look with a lot of make up. Makeup is a miracle worker :mask: It's a bit hard for men to do that though!.

    Have people reacted positively to you saying he is sick, now that it is visible?.
  4. ukxmrv

    ukxmrv Senior Member

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    People can see that I am disabled. The walking stick, wheelchair etc tend to give it away. If asked I say that I have a neurological disease.

    Agree that saying ME means that the stigma and prejudice kicks in with people and is a big problem. For that reason I brush off discussion about the disease unless it is someone that I want to get through to.

    Recently I was told by someone that I would be a lot better if I lost weight. Someone else told me in detail about their mental illness and help through drugs - then tried to get me to try them. They didn't want to believe that this was not a mental illness.

    Even people who are kind get trapped into the misinformation and politics. It takes a lot of education to get through to people. They want to believe that they can be useful in easy ways and start sending newspaper clippings of miracle cures.

    Now I wait until people show an interest, judge if it is worthwhile and then get their agreement to educate them. It's not worth it otherwise as people believe the lies and these lies are hard to shake.
  5. TinyT

    TinyT Senior Member

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    Yeah I tend not to tell many people, if any (except close family & close friends). I am usually pretty evasive with answering questions (e.g. 'so what do you do?'). It helps that I am doing some very part-time study at the moment, so I just say "oh I'm doing my masters" and quickly move on. I avoid conversations about "do you work, do you play sports, when will your study finish, why do you get your shopping home delivered etc?"

    People just have a hard time understanding and I dont have the energy to explain. I do explain it to friends that are actually worth the effort explaining it to. My fiance tells people at work that I'm "not well" which I'd rather he didn't. He kinda doesn't fully understand why I dont like telling people. I think he is getting more of an idea now, after some not so nice comments from a jerk he works with.

    I am moderately severe (prob 30-40%) but my illness is still pretty invisible to others. E.g. the only time I see others is when I am having a 'good' day and make an effort with makeup etc. What they dont see is me comatose in bed till after midday most days, or the amount of rest I have to do before & after getting 'out'
  6. pamb

    pamb Senior Member

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    Edmonton, AB, Canada
    Hi Tulip,
    I wish I could say 'people' react positively, now that, much like ukxmrv, it is obvious something is amiss when he does go out. I also have learned to start with saying it is a neuro-immune disease, then if they are a bit interested I say it is in fact ME/XMRV. Of course the only place John goes out to is medical appts, and here, like elsewhere, you can see the medical staff's eyes glaze over when you mention ME/XMRV. And so it goes. I do get the feeling they are a bit afraid of something they know nothing about and clearly what they see before their eyes is not the 'psychosomatic' disease they think it is.
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have to tell people why I have to sit. My landscaper came over, I went outside and had to sit and talk to him about flowers. I have to explain the sitting all the time from POTS. He was so sweet and helpful! I tell people when I can so more and more will know about POTS.
  8. Sean

    Sean Senior Member

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    Only on a need-to-know basis.
  9. SOC

    SOC Moderator and Senior Member

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    I rarely use "Chronic Fatigue Syndrome"; I only tell people when I need them to understand and "CFS" does exactly the opposite.

    I usually only talk about the specific symptom relevant to the situation. For example, my students' parents know that I have a relapsing-remitting illness and may have periods when I have to cancel tutoring. They also know that my immune system is not strong, so I need not to be exposed to infectious illnesses. They're usually very good about it.

    When people who see me walking around the house see me in a wheelchair outside of home, they occasionally ask if something happened. I just say that this is usual -- I can walk a little around the house, but I can't walk very far and often have trouble with stairs. That's been enough so far; no one has yet asked for more info.

    In my experience, even my closest friends don't want to hear about all the miseries of my illness. They know about it, and how limited I am, but we don't talk about it a lot. They are considerate of my limitations and I don't ask them to be my caregivers, so it works out well. ;)
  10. taniaaust1

    taniaaust1 Senior Member

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    Cause i see the lack of knowledge being certainly part of the crap we get from others who truely do need to be more educated, if it comes up and Im having an okay day, I will tell the person (I will thou keep it to myself if I feel like I cant deal with their reaction at the time).

    This has been harder on me due to having told people as I get now crap from my neighbours at times. I'll be happy thou if only one person in every 15 Ive told... has come to understand this illness is a serious one and more then just "fatigue".

    So sad we mostly need to keep our illness hidden due to stigma.
    .............

    I also quite often need to tell people due to the affects the illness has on me and the questions asked when they see me having problems... umm thou I then often just tell them about the POTS.
  11. Mya Symons

    Mya Symons Mya Symons

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    This will probably sound horrible, but I lie. I also have osteoarthritis so if someone notices something and asks me if something is up, I tell them it is the arthritis and never mention anything else. If I mention CFS or Fibro I usually get treated like sh#@. I guess I am just partially lying. It works though. No one treats people with arthritis like sh@# and they usually don't mention much of anything else. I like that!
  12. Enid

    Enid Senior Member

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    Very much a similar situation with Mya with very visible reactive Osteoarthritis (stick and chair to chair some advance from being bedbound). I did mention ME (selectively) in the early days to try to raise awareness - Doc/Neuros/family/close friends only, otherwise glazing over of eyes in these parts, or thorough disbelief thanks to decades of the Weasels.
  13. Tulip

    Tulip Guest

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    I am sorry to hear that Pamb..

    Mya and Enid, I also have Osteoarthritis, for me it's only just starting to kick in so isn't effecting how I walk etc. I really wonder if it's one of those diseases that goes hand in hand with ME?, same with degenerative disc disease, my spine is falling apart!.

    It's sad we can't just say we have ME.
  14. Enid

    Enid Senior Member

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    It could be Tulip - my Neuro who finally came to accept "ME" from MRI brain scans (high spots) said yes and they think it's viral - Osteoarthritis was termed "reactive" in my case. Some muscles do not seem to recover too well for me. (Generally more in the back)
  15. Mya Symons

    Mya Symons Mya Symons

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    Tulip and Enid, I am curious, do you also have thyroid disease or FMS. I have come accross a lot of people who have FMS, osteoarthritis and hashimoto's disease, not so many with CFS and osteoarthritis however. It seems like the three often go together.
  16. Dainty

    Dainty Senior Member

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    This.

    And this.

    For me, not telling is only an option over the Internet, since I'm so necessarily isolated that anyone who gets near me hears a mouthful from my caregiver first on the matter. My severe MCS also means that it's impossible to give people the impression of being healthy because people wear so many chemicals I either have to keep quite a distance with the wind blowing the opposite direction or I have to wear an OSHA gas mask, which kinda stands out. :p

    In my experience if someone takes the time to get to know me then they soon forget about "CFS" because they realize for themselves that whatever the label, my condition is severe. I find that only talking about a specific issue at a time and only when needed works out the best.
  17. Enid

    Enid Senior Member

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    Mya - just got back after 2 days crash (why do the family all have to come together) - my hypothyroidism was caught late but treatment did not stop the whole gamut of ME symptoms (listed very well in the Canadian Consensus and FM a part - which it would be in this multi-system disease including all the glands). My Neuro clearly stated my own Osteoarthrits and Osteoporosis was reactive and he thought probably viral. I don't know in the intense neurological pain if this is termed FM - it's definately part of the ME process/damage. All the other problems - twice passing out he could not understand as signs of MS/Polio etc exhibited.
  18. TinyT

    TinyT Senior Member

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    Don't worry about it Mya, I lie too.

    I have noticed that I get a much better reaction if I tell people I have Dysautonomia (POTS). I told my dentist about my POTS and he and the assistants were really nice, helpful & accommodating.

    I feel guilty sometimes as I'm not exactly helping to raise others awareness of this disease. It's just too hard sometimes. Most doctors/medical people tend to switch off after you tell them you have ME/CFS

    That being said I have gotten really great & supportive reactions from telling a few people lately (a neighbour friend & my wedding invites designer). I think it was due to the fact that each have had experiences with ME/CFS (family & personal experiences)
  19. drex13

    drex13 Senior Member

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    I don't tell anyone anything. The only people who know I was ever even diagnosed are my wife and my mother (and the doctor who diagnosed). Most people would never know I was ill to look at me. I've always been atheletic and even though I don't work out or exercise anymore, I'm still fairly muscular. I do have periods where I lose alot of weight and look sick, but I don't bother explaining it to anyone. It would be difficult to explain, and I think difficult for people who know me to understand or accept. Or maybe, it's more difficult for me to except.
  20. SaveMe

    SaveMe *****

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    just say you have HIV... they will understand :)

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