New to all of this

How do you deal with the looks you get when people don’t understand and just think that you are overacting ?

Go here and read this... Copy whatever you want and need, put it into a letter and mail it to them. I actually printed a lot of mine and mailed the hard copy. Most actually read the whole thing and I have gained a lot of support from it...

A letter to share with your Friends and Family...

We are all with you in the same boat and understand where you are at. You will find true friends you never knew you had.


You learn to smile and continue your life in the knowledge that this person is not a part of your support structure. So often the people in your own family are the ones who are least supportive........or no support at all. So, you look for support in other people. Many members who have joined this support community have expressed how wonderful it is to finally find people who are supportive.

For me, time is really the only thing that helps it. The ones who were scared or couldn't accept it eventually fade away, the ones that don't believe eventually see there's no faking this. After so many years the only ones i have to convince are new dr's and I normally just let my small's novel worth of medical records do that for me at this point. It's sad it has to be that way, but that's how it's been for me.

I used to get so worked up about when people wouldn't believe that I was in pain or struggling, or that I genuinely needed help. Some people only start to genuinly believe you when you're stuck in bed in agony and they see you at your worst. But in the end you've just got to smile through it, and value the other people who do genuinely believe you and want to support you. If anyone ever says that I'm being silly or over reacting I personally just laugh it off, some peoples opinions will never be changed, so you must make the best of it, but I do know how hard it is. Hopefully you've made some lovely new friends on here who ofcourse want to help and believe you :) Hope you're not in too much pain xxxx

Hi Kim, it’s hard, but like Rachel said you learn to smile & continue on. It’s usually those who are ignorant to the facts, and sometimes that included some dr 's … I don’t waste my energy on trying to explain anything to anyone, except to those in my support circle. :slight_smile: its sometimes hard to answer the question “how are you” I have learned to keep it short & sweet… You can usually tell who is genuine about wanting to really know

Hugs & blessings

Wow, what great advice! I don't have anything to add to all of their wise words.

First of all, if they are just giving me looks, the problem is theirs, not mine. I look them in the eye, smile, and say "hi!". If they are people in my inner circle of life, I invite them to ask questions. If they are strangers, then I've made my point already in my reaction. I spend my energy on those who are important to me.

When I go out, I do find it helps to carry a cane or walker, as that seems to give credibility in the minds of others. (Never mind that I also need those for balance or for carrying things.) Invisible illnesses are hard for others to see, much less understand. I make it visible.

When asked what fibromyalgia is,I tell them it is a central nervous system disorder that affects the whole body. Thats my "quick and easy" explanation. If they want to know more, they will usually ask.

It has taken me a long time to develop a thick skin. It is hard, and you ask a good question. I was more of a turtle, moving slowly and quick to retreat into my shell. I have become bolder as I get more experience dealing with those "looks". Now I challenge them with my response (looking them in the eye, smiling & saying "hi").

After having FMS for over a decade, I am only this year starting to let people even know. Even my closest of friends had no idea. The only way you would have known would be if you spent more than 3 hours with me on a given day. After that you would start to see things which would raise questions. When it was taking 60 mg of Morphine a day to complete a single days work, we knew it was the end of working for me. After that I hid myself away from everyone for over a year. I did not want people to know, and I did not want people to see how much my health deterioration had progressed beyond what I could hide.

So after two years of therapy and counseling I have opened up my condition to be known. Yes, I did send out a copy of that letter to everyone. I have received a lot of positive support from it, but I have also seen who has not replied or shown interest. Those people I have cut from my life and severed all physical and emotional attachment. I have gathered around me those who care even if not understanding everything. People now know that if they invite me, I need a place to sit, and a place to be part of the gathering. I need room for my walker or wheelchair, I need to be someplace cool and I need a lot of ice water. My friends and family arrange for me to be part of their lives and be as comfortable as I can. I am not expected to help my friends move their houses and I am not held less in their eyes because I am unable to do so. My letter was my line in the sand from which I could rebuild my world and my relationships so that I may still be a part of the lives of friends and family.

And yes, that walker or cane does stand out like a neon beacon letting people know that you may have special needs and your real friends will go out of their way to assist them. As for the rest... Try to let them go and fill your life with as many of the uplifting and positive people you can. I wasted 2 years of my life hiding at home, and I hope and pray that you and others here do not follow in my mistake. Let people know, cut your losses and embrace everyone who shows the slightest interest in your welfare. There are many Angels out there, and what surprised me the most was that may of friends friends have stepped in to make my life better. People only known through others have become closer now than many I have known my entire life. You also find you are not along, You may very well have your own friends with FMS who are suffering in silence... I did! Now we have our own little club.

I just ignore it when I am there I also have raynauds so my hands will go bright red and numb and I will feel nervous and as though everyone is staring ( whether they are or not)?but I just ignore it . Its the stuff people say they gets to me if Fibro is real etc…but what can we do they don’t live inside of our bodies they don’t know our constant hell.i know it’s hard cause I struggle with it daily but just stay strong:)