I know this sounds like a weird question, but had to ask because I am a little embarassed by my FM, here's why.

This condition is invisible, you can look very healthy and be as sick as a dog. Family and some friends can be put off by my "I want to be alone" moods, and explaining the problems of FM to them is just plain useless.

Some people who THINK they know FM have all the answers, they say "Put on a happy face, go exercise, you will be fine. Doesn't work.

Alone time can be very important to me, especially during a flare up, sometimes this can be taken as "being lazy" yet, I still LOOK okay.

With my FM, I can be just okay for a while, and other times anti-social depending on my pain level, fatigue level, etc, yet I still LOOK okay. This can be confusing to others, I suppose.

I have to admit, I am embarassed by the complexities of this condition. If I broke my arm and I was in a sling, I feel I would be more credible to most people, hopefully, my arm would heal in time, the sling would come off, and I would be on my way to healing. Not so easy with FM.

Does any of this make sense to you? Hugs, Chelz.

Chelz
I understand COMPLETY. Just last week I saw someone who I hadn't seen for a couple of years - she knew I had been ill. She looked closely into my face at least twice with the same comment "you look well". I "never apologise -never explain" any longer, so said nothing. There is always the hint of "mmmm! I wonder if it's psychlogical". So this is the reason one may feel embarrased - but don't.

Needless to say, after these social occasions, I don't look so well - tired face, red eyes and extra fatigue.

Also, I think sometimes I take special care to look good, I don't know why - maybe habit and the fact that they are far and few between. Cheers, TN

I do also. How can you not be. People are so judgemental. I think some of us do look sick though, I can see how pale my face is and dark circles and sometimes red patches. I feel bad that no one believes us. I don't understand why? Maybe if more men had this illness it would be looked at differently. Ruthie

I am not so much embarassed by the FM as by the CFS. I have stopped telling people I have CFS because of the strange looks. I don't even think my new doctor believes it exists. I have just given up trying to explain.
I'll just stick to the FM from now on. More people have heard of it and seem to accept it without a lot of questions. I guess I'm just chicken!! GB66

[This Message was Edited on 05/30/2009]

Am I embarrassed by my FM at times. You betcha!@!!

The way I combat it especially at work is to be very open about my condition. I have people ask the dumb questions, but overall my it has been more good and honest questions than bad.

Now my daughters school is another thing all together. At times people think I just cannot be bothered. They see me coming to school for trips and such. What they do not reliaze is that when I am able to do some things it is only through carefull planning and much rest before and after.

My responses to all the stupid "lazy" remarks is probably not the best, but I tend to get quite short and scarcastic.

But mostly I tend to feel bad for people like that, because chances are that someone close to them will have some version of an invisible illness. I have had a couple of people who have come back to me with an apology. They have a new understanding of what I go through.

But is is extremely hard to deal with people who think it is a cop-out.

This is probably the reason I have a small group of very close friends who understand when I tell them I can't do something, that I truly can't.

What you are feeling is absolutely normal. Most of us probably have the same feelings from time to time at least.


Hugs

T

because people tend to try and evaluate every move you make or don't make. Like"She could do that, but she says she's sick" or "She looks good". The appearance issue gets to me because people want you to look like s... and don't understand that it took a lot of energy to just get out.

If it's a good, you try like heck to enjoy yourself and face the consequences later. But if you feel that inquiring look from others, it sort of kicks the fun out of it.


This includes family, friends and other acquaintances.

The one good thing I have learned is to try to not be judgmental about people because it hurts.

you were able to say what I was thinking, thank you.

I struggle with this.

gentle hugs

that goes like this: "It's none of my business what others think of me"...

You have to be strong about who you are. That can take time and work but very very possible.

I grew up in a small town thinking mentality and moved far away and was able to work on that brainwashing of my early life.

If you can't physically move, then you need to work on the mind physically moving away from undesirables.

I DO get frustrated. I guess I'm like most of the others who have posted here.

I met a very good friend for lunch not too long ago and discussed the fact that I had been thinking about filing for SSD before long and she said: "You'd better stop looking so good if you're thinking about filing for disability because you don't look sick at all. They'll take one look at you and deny you in a second!" This would have really hurt my feelings but I know her well and she was just trying to be helpful.

There are many people here at work who think I do the bare necessities to complete my job and I think it really irks them. The fact of the matter is that I know my work inside out and have been here for over 25 years so it is very easy for me to know how to get things done. BUT they don't understand that almost everyday it takes all the energy I have when I don't feel like getting up out of bed and they don't realize how my shoulders burn like someone is sticking a hot poker on my back or how I feel so sick I could toss my cookies when I've been here at the computer all day and my hands hurt so bad I can hardly stand it..Nope, they have no idea how we suffer.

So, that said, let them think whatever that will. If "they" don't like the way I do my job then they can find someone else to do it and I will file for SSD because THEY decided it is time!

Most of my family understands and I am very blessed for that! Some of my friends haven't figured it out yet. They never ask if I need any help with anything or how I'm doing. Guess they aren't my REAL friends after all - are they?

Hang in there! You're not alone.

Blessings,
Rockismom

I'm not embarrassed, but like many others have found it to be very frustrating. If the people could see me when I'm at home, they'd get a whole different view.

I think many of us have learned to live with the pain. Sometimes there is NO hiding it. Often when I walk into work, it's obvious what kind of day I'm having. I can't help but walk gingerly.
I've had people say "you're feeling much better today, I can tell." Nope, its just that I'm not showing it as much.
I do actually get understanding from most people. If they don't, they don't tell me. Ironically, the one person, my best friend, is the one who never asks me how I feel, how Im doing (with FM) Still gets a little peeved when I don't want to run errands with her etc. I just try to go to others for the support or ear that I need.

I don't think any of us are "babies" about our pain, I think it's actually the opposite, we are tough survivors!

So embarrassed, no, but I definitely choose who I share details with. I try to educate people that I come into contact with regularly, giving examples of what we Fibro sufferers go through on a daily basis.
Looking fine is hard!!!! I agree, a sling, a cast, crutches etc. is much easier for other to understand.