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Do you avoid telling others you have FMS?
10 Replies
ellymay - September 26

I was just wondering if others avoid mentioning that they have FMS. I do. I think it might because so many people think it is not a legitimate diagnosis and that people who have been diagnosed are really just whiners who want attention. It is so misunderstood by so many. It isn't diagnosed by bloodwork or x-ray but simply by putting symptoms together. This seems to cause people to be skeptical.

My normal response when people notice that I am in pain or am walking with a stiff gait is that it is due to arthritis. This is a partial truth.

Just wondering how others feel about this.


kvc33 - September 26

I tell the truth. The more times people hear of it the better. They may not believe it the first time but maybe they will later on with someone else. I am not ashamed of my disablity, in fact it makes me a special person, just like you!


ellymay - September 27

Thanks for sharing your perspective. I think you are right, the more people who become educated or FMS affects their lives the more understood it will be. Have a good week.


HerRoyalHighness - September 27

I have only told people who I think would understand. On several occasions, I have been wrong, and the news was received with a figurative "eye-rolling". I admire those who can freely tell people of their diagnosis, and believe it will be the key to better educating the general public.


fibromite.u.k. - September 27

I too, also tell people that I have fibromyalgia as I think it is so important to araise awareness of this awful illness. When I mention it to them, I always ask if they have heard of it and find that some have, some haven't and some have heard of it but don't really know what it is. I try not to bore people with long descriptions but if they seem interested and ask questions then I spend as much time explaining it all to them as they seem to want. I find that people are mostly interested in it. I was recently on holiday and was explaining it to a girl on reception and several others stopped what they were doing to listen in and said that they were glad to know about it and what we have to go through. One odd experience this year was when I was having a colonoscopy and was sedated. After it was over the nurse present told me that I had given her and the doctor there a real lecture about fibromyagia which they found interesting, yet I don't remember talking about it during that time at all. Don't be ashamed of having this illness, it is better that people know about it and the more that know the better. God Bless and have a good week.


deadgamegrrl - September 27

I agree that it is important to educate people. Although I am new to fibro, I have been pretty open about it. People are often very surprised that I have it, since I am a fitness trainer and perceived as being very healthy.
When I was diagnosed with severe depression years ago and had to miiss weeks of work, I chose to be open about that too, even though there was still a big stigma about it. My attitiude is: this could happen to anyone, it is not a reflection of who you are.
I do have somewhat innappropriate responses however. Shortly after my diagnosis I went and got a purple butterfly tattoo as my personal 'screw you' to the disease. It doea make a great conversation starter lol!


Fantod - September 27

I always tell people that I have Fibromyalgia (FMS). I feel that it is an opportunity to educate and help people understand that it is real. The sooner people grasp the complexity of this illness the better for all of us. We need more research and doctors that understand how to manage this syndrome. You never know where your comments may go but it certainly can not hurt. Hiding it is not good for you emotionally and it does a disservice to everyone else who also suffers with FMS. Take care.


axxie - September 27

I have always been open and honest about having Fibro, I don't want sympathities from anyone, but I won't go out of my way to tell anyone either. If they ask me, what it is, and how I feel and they have the time, then I will explain. I explain it, simply by saying that body feels like it's broken in millions of tiny pieces and somedays these tiny little pieces just give me trouble and they don't line up, therefore I'm in pain. Some days I feel good, others days it's a rough time of making it out of bed.

I had cancer and when I was battling cancer, I never wanted anyone to give me there simpathies, yeah I hated the winers who complained that they had to sit in there air condition car in a traffic jam. I would usually laugh to myself, thinking and here I am battling cancer and the doctor has only given me hope that I make it to the next gut wrenching treatment.

I simply don't care what others think of me, I'm not on this earth to be a people pleaser, that's a life sentance of never being happy, because you are forever looking for approval from others.


solanadelfina - September 28

I will also tell people that are in my life, or if a situation comes up. A few times at work I have mentioned it to customers that are looking for something similar, and have met many that also had fibro and was able to share some good information. One time at a family gathering I brought it up when my friend's sister's boyfriend was wondering why I couldn't have regular soda, and it turns out that his mom also had it. I was able to explain a few more things to him that would make it easier to understand what his mom was going through, as well as suggesting my 'guardian angel' doc. What will destroy stereotypes or prejudices is simple truth.


ellymay - September 28

Thanks everyone for your comments. I have given all of them much thought. I am going to try to be a bit more open with others. Maybe some of my hesitation has to do with the fact that I am an RN educator and am acutely aware of the perception of FMS that is held by many of those in the medical field, many of the the "eye rollers". I don't need their approval or sympathy but you all helped me see another side of this issue which is perhaps I should be more open in order to educate. I do appreciate all of your perspectives and encouragement. Thanks for taking the time to share.

Hope all of you have a great week.


Stacey373 - September 28

For a long time after I was diagnosed I didn't talk about my illness. Even though I was so relieved to finally find out what was wrong with me, I think I was in denial until a few months ago when I found this forum and finally accepted this illness. I haven't really been in situations to tell people what I have, other than close friends and family.

The couple of times I've 'mentioned" it to my daughter's friend's parents, they have acted like they knew what Fibro was and sympathized with me. I really don't want sympathy....I think I've only mentioned it because it was my way of explaining why some activities are so hard for me.

Anyways....just thought I would add my experiences to this discussion....Take Care Everyone, Stacey :o)



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