What has been your approach about sharing your condition? Some of my feedback when I have shared has been positive, but mostly I have gotten the response: "But you don't look sick!" My immediate reaction to that is: "Do I need to look sick to be sick?" which usually shuts them up. That is part of the reason why I sought out this group - I need to know that I am not alone in this struggle.
Thank you so much for all the warmth and welcome I have received thus far!!
When I’m out at the store shopping and I run into someone I know and I they say " well you don’t look sick" it drives me crazy. My husband usually tells them, " yeah because when you see her out it’s because it’s one of her good days. Not like the rest of the week when i see her and she has to stay in bed because the pain is to much." Just because you can’t see a illness doesn’t mean it’s not there.
I love that reply from your husband! It is so true. I have no idea why people say that to us. I guess people are just uncomfortable with illness. Your husband sounds great.
Wendy
Rosey said:
When I'm out at the store shopping and I run into someone I know and I they say " well you don't look sick" it drives me crazy. My husband usually tells them, " yeah because when you see her out it's because it's one of her good days. Not like the rest of the week when i see her and she has to stay in bed because the pain is to much." Just because you can't see a illness doesn't mean it's not there.
"These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seam like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please don't say, "Oh you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welome.
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can't move. With this one it gets more confusing.
Please repeat the above paragraph subsituting, "sitting up", "walking", "thinking", "being sociable", and so on... it applies to everything. That's what a fatigue based illness does to you.
Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and an often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end?!) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct. - if I could do it, I would.
Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chonic illness.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at on point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with fibro then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the internet) between people with Fibro, if something worked we would know.
I depend on you - peple who are not sick - for many things.
But most importantly, I need you to understand me."