How do u get people to understand fibromyalgia?
I have fibromyalgia. I was wondering how I can get people to understand what it does to me. No one seems to understand how it makes me feel and some of the people don't even believe me that I am in pain. What do I do?
Public Comments
1. I have the same problems. Whats weird is my sisters and I all have fibromyalgia. My oldest sister got it first and I thought she was faking all the pain. Then years later I was diagnosed with it. I am not sure how to explain it to people either. So I stopped trying. No one will understand your pain unless they go threw it as well. The doctors are even pricks when it comes to it. I am 21 and have this problem and they look at me as a girl trying to get drugs. I haven't been able to work in over a year because of it. Sometimes a can't move, get out of the bed or anything. I don't know how to explain it to anyone.. Maybe kick them in the nuts and say..."Does that hurt?? Ok my pain in 100 times worse than that!" LOL.. I have learned you can not expcet others to understand your pain because they have not gone threw it!2. The only thing you can do supply them with all kinds of information on the subject.
3. It is a difficult issue. About 20 years ago, fibromyalgia wasn't even considered a real condition. I remember a national news magazine quoting some doctor saying it was just in the woman's imagination.
So imagine how much harder it could be. :)
Hang in there though. You're right: no one can know exactly what you're going through. Even another person with Fibromyalgia can only use their own personal experience as a frame of reference. They do have the same activities as you. They don't feel the same pain as you.
My suggestion, and I know it's not as easy as it sounds, is to let go of the need for other people to understand. That doesn't mean don't try to share with others, but share without the need for them to "believe" and you may find that far more will start to relate to and connect with you.
4. Beat them with a cast iron frying pan. Then they will be able to relate. It's so annoying when people don't understand "invisible diseases." I get the same thing with my Lupus, but at least I can show them a blood test. Someday people will understand fibro is real. Until then- use the frying pan!
5. I have the same problems explaining my son's condition. Most people ask but really don't care to understand as the info is above their understanding. If it is your doctor, find a good rheumatologist. I drive 3hrs one way to see my son's doctor. A trip weel spent. I just started telling people he has an autoimmune disorder and leave it at that. Be thankful you don't have to deal with public school and the special ed. system on top of it all. There are a number of online support groups, some hosted by yahoo groups. HUGS!
6. You could get a second opinion-many doctors who diagnose it admit to knowing little about it & its origins.
There are doctors who link it to various infections.
The private hospital below treats these infections.
It may be worth seeking an allternative diagnosis-that includes most people who answered the question too.
7. Check out http://www.fibromyalgiasource.com for lots of information and articles about Fibromyalgia.
8. My personnel experience is that Md's are alot like that but DO"S know more and are more understanding of your problems and pain. I worked in a hospital and had alot of negative feedback about my fibro. They seem to think it is not as severe as it really is. MY ruematolist bascily has given up on finding a treatment for me. She says I have had it all. But my DO continues to search for answers for me and personally supports me not to give up hope. Susan
9. Explaining Fibromyalgia is about as difficult as learning how to live with it in the first place. I can't recall the source (not surprising to those who understand) but I have always quoted whoever it was that asked, "Do you remember the last time you had the flu? ...remember the aching body pain that affected your whole, entire body?.....THAT'S what having FM is like." And the most amazing thing to me is the need to continually repeat the same statement to the same people....again and again. I want to say, 'how COULD you forget what I told you? It's a most frustrating malady.. Also, I think what makes it so hard for others to 'get' is the fact that as long as you don't move, your outer appearance gives no hint as to how awful you are feeling. Unless you are having an acute flair-up, you appear totally okay. I find remembering a quote by Betty Davis that often makes me smile at myself. She said, 'getting older is not for sissies'....boy, is that an understatement. Good luck to you and remember you MUST work really hard at keeping your sense of humor.... it will more often than not, be your lifeline.
