Please Help! Chronic Illness and Meeting People

Over the weekend I received an important e-mail from a chronic fatigue folk out in California.  He brought up a common dilemma and I can think of no group more experienced (translated: prepared) to discuss such an issue than y’all.

To be honest, I am not convinced my answer to this question is the best, so I want to put this out there for as many responses as possible before I publish my own answer.  Please opine via a comment on this post:

When you meet new people do you volunteer the fact that you have a chronic illness, or do you wait to discuss it until it becomes an issue?  When you tell them how do you bring it up?  What do you say?

You folks are always so inspiring and honest.  I look forward to hearing your responses.  Thank you for your help.

I will post my response tomorrow night.

4 Responses

  • Amy on January 19, 2009, 23:51:02

    I don’t bring it up right away. Some people will ask when they see me out somewhere & not drinking alcohol. I don’t mind telling people, but occasionally I will run across someone who does not believe in Fibro, and all of a sudden I feel so small.

    Reply to Amy
  • Diana on January 20, 2009, 05:17:13

    I am newly diagnosed, but have had degenerative disc disease and pain for years. I wait until a question comes up about my health or limitation. I am not sure how it will change now that I have Fibro. At this time I feel more guarded because people do not know much about it.

    Reply to Diana
  • Rochelle on January 20, 2009, 08:59:56

    I usually wait to bring it up. Occasionally there is a situation that has required it to be brought up. For example, I delivered several boxes of Bibles to my church recently and asked for a guy to come help me bring them in. The receptionist looked a little surprised, so I explained to her that I have chronic pain and the boxes are too heavy for me to be lifting without highly paying for it tomorrow. In that instance, it became a necessity to explain myself. You’ll always feel that immediate shame and fear of their reaction… but generally I think people try to understand. They just don’t understand. That’s just the way it works. Unless they personally know someone who has a chronic illness, they don’t get it. I sure didn’t get it before I had it. I think the more we educate people about it, the better it will be for all of us. So yes, eventually I tell everyone now. But it took me about 17 months after having the symptoms before I started getting comfortable telling people, because that’s when I got the official diagnosis (even though through research I was sure that’s what it was). I think there’s something to be said for researching and learning a lot about it on your end before becoming very vocal about it. Because if you don’t know enough to fully explain it and answer any questions they come up with, it’ll be even more difficult for you. Get yourself to a point first of knowing more and feeling comfortable with who you are now, then you’ll feel like telling people more freely.
    Hope this helps. 🙂

    Reply to Rochelle
  • K8 on January 25, 2009, 17:31:18

    Thank you for your feedback. I appreciate your input and am sure it will be helpful to our CFS friend in need…

    Reply to K8