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How to Mention Illness to Strangers

Posted , 8 users are following.

jackie00198
jackie00198

When I'm in a situation with strangers, I struggle with how to mention my illness. If I say nothing, I feel very awkward, because people seei me lying down and unable to talk much. If I mention that I have this illness that saps my energy, people often look at me in a strange way and don't comment. Like maybe I gave them information that they didn't want. So often I'm between a rock and a hard place. How do you guys deal with this? 

2 likes, 7 replies

7 Replies

  • GeorgiaS
    GeorgiaS jackie00198

    Posted

    If it's relevant to the situation I just say I have ME and that I'm unable to do certain things. If they want to know more they'll ask and I'll tell them. Sometimes I'll ask if they know anyone who has it. There are times when I don't mention it if it doesn't seem necessary.

    I just wing it I suppose. razz

  • bronwyn97278
    bronwyn97278 jackie00198

    Posted

    Hi Jackie; when you mention "strangers"...are these people going to become more Into your life, or remain as strangers?   If to remain as strangers, I say/would say, "can you excuse me today for not participating much today, as I'm not too well....not anything contagious, just not too good"?    If they are interested, and ask more, then it becomes a case of explaining....and if they don't understand, or havn't heard of ME (or do you have both, ME and Fibro?)...then tell them, and It may become the conversation for the day...."I'm sorry, it's a bit hard to explain as I am too unwell to do much talking, but this is the situation.....etc.....it is quite common these days, and information can be found on health sites.....and perhaps I can tell you more next time?"   If they are genuine people, they will understand, maybe research, and come back....or let them go, if not genuine????   Does this make sense, as I know we all come into contact with similar people/similar situations, and I agree, it can be something to think about, for there are many times, that I have just put on a brave face, and let them think what they like.....will be waiting for others' suggestions.................Bronrolleyes
  • JulieBadger
    JulieBadger jackie00198

    Posted

    I tell them I've got M.E. and leave it as that unless they talk more about it.  If they do I explain that it zaps my energy and messes with my brain.  I might also tell them how long I've had it if it looks like they are interested.  If I'm on the floor I might add that I'm having a bad day with my M.E. and that I'll be alright I just need to build up my energy level again or that I'm conserving energy but I'm alright. It's surprising how many people know someone else who has it.  I don't tend to mention Fibromyalgia as it is less known for how hard work to live with that is.  I only mention that if the stranger mentions it. 
  • Ravenwood
    Ravenwood jackie00198

    Posted

    I have the same problem.  Maybe we all do?  What I do is tell people about my illness if they are giving me funny looks or is someone asks.  However, if people treat me like a normal person, I usually don't say anything.  What I really hate is when people back away slowly as if I were contagious.  Some people in my smallish town won't talk to me if I am using my cane, but will talk to me if I am feeling good enough to go without any aids.  This makes me sad, and I feel a bit demeaned when this happens.  Oh, well.  I can't control how others think.  I just have to remind myself that what others think is not a representation of me.  Only I can determine who I am.
  • nannettesea
    nannettesea jackie00198

    Posted

    Hi, Jackie-

    This is a good question.  What I tell people depends on how well I know them.  One thing I'm learning, about what I say in general, is...I don't have to explain myself.  If I feel the need, though, I say I have chronic fatigue syndrome, and it prevents me from having a high level of activity.  If they want to more, then I will tell them.

    Jackie, I'd like to know more about your journey, because I'm interested in what you've tried for treatments, including the current anti-virus protocol.  I will be contacting your doc soon to see if he's taking new patients.  I have to save money for a trip to LA from Tucson, but he's pretty close.   Are you happy with his treatments so far?

    Also, how long have you had CFS?  

    My story is that I'm 54 yo, had CFS probably for about 25 years, but disabling for the past ten.  I wasn't diagnosed until about 4 years ago, so went untreated prior.  I've tried naturopathy, but not standard medical treatment, which I'm now planning to pursue.

    • jackie00198
      jackie00198 nannettesea

      Posted

      Hi, Nannette. I've had ME/CFS for about 15 years. I was diagnosed almost immediately, only because I insisted I was seriously ill when a few doctors essentially said it was all in my head. So you'd think I'd be better because I was diagnosed early. Not the case, at least in part because I didn't understand that I shouldn't push myself. Even the doctor who diagnosed me at UCLA didn’t explain the relapsing nature of the illness. I had a moderate case until 2 years ago, when a trip I took caused a bad relapse. This caused new, extreme symptoms that I’m still dealing with, like nerve issues—tingling, burning, and heaviness in extremities. I found Dr. John Chia several months ago. By the way, he always has a 6-month wait list, and only sees people with ME/CFS. So that tells you how many people suffer from this illness. He’s wonderful, but only has a few drugs up his sleeve. The first thing he gave me was actually a Chinese supplement, which didn’t work for me but does work for a certain percentage of his patients. It worked for his son, who also had the illness. You can only get this supplement from Dr. Chia. Then he prescribes two antivirals that are used for AIDS patients. I may have had some success with one of these, so I’m going back on it. He’s pushing hard for more research. He believes ME/CFS is a virus that “hides” in brain tissue, which is why it hasn’t been detected in the blood. He’s a very compassionate doctor, and I guarantee you will feel listened to if you see him. Best of luck. 
    • nannettesea
      nannettesea jackie00198

      Posted

      Hi, Jackie, thanks much for sharing some of your history.  I read something just the other day, though can't remember the source of the article, that proposed that CFS starts in the brain.  What Dr. Chia said!  Though it didn't specifically say a virus.

      Have you tested positively for viruses?  I have chronic positive Epstein Barr.

      I will get on his wait list, for sure, and maybe a few of the other docs you suggested, and see who can get me in first!

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