I think one of the most frustrating things is when someone says to me, "Fibromyalgia is all in your head." or "Oh that's just a blanket diagnosis for when they can't figure out what's really wrong with you."
How can I respond to these people in a way that will get them to realize how wrong they are?
How can I explain to my family, friends and coworkers what Fibromyalgia is and help them understand how severe the pain is and that it is REAL?
no one will ever understand. you have to have it to really understand and we don't want the ones we love to feel like we do.
as for the comments i just say, gee if you were right and my doctors were wrong i would be fine. how i wish you were right. shuts them up. there are no words that create compassion where there is none.
i learned to say no to invites and not offer an explanation as to why. how i feel is my business. i don't have to share if i don't want to.
ps if you go to past posts there is a letter i wrote that may be of some help to you. others have said it helped them with family and friends.
Hi Blue...Long time not see you. I understand Lexi (that is a pretty name) how that feels to have people not understand. I retired due to this and after cervical spine surgeries which landed me with Chronic pain/FMS/MPS and after 19+ years of public service not ONE person wished me luck, said they understood or we will miss you. All I got was jeers and sneers and most of them behind my back. My own dh doesn't get it. The part about this disease is like Blue said you do not understand it unless you have it. You cannot look at us and see the inside pain. I refer to it as inside out pain. I do say like Blue in a way is that " I would trade you any day". Those that are very close to me can see the difference in how I act. I used to run many many miles, ride horses almost daily and lift weights at least 4 times a week. Now, I no longer at all, use bands not weights if I have the energy and ride maybe once a month. You cannot see me and know that. You have to be able to look at thee people and tell them to do some research of their own and learn about the disease if they do not believe you. If they won't then I wouldn't spend my valuable good times with them.
When I have felt the need to defend myself to the "non" believers of FMS....I have said......I hope that you never know what it is like to have Fibromyalgia.... It usually stops them dead...wondering.... To others I ask....what would you do if you felt like you had the flu every day of your life...and to know that you are never going to get over it.... Both of thses statements have stopped people...made them think. My own family Dr. said that FMS was a waste basket diagnosis.... Geez, that made me feel really special....I then proceeded to make a phone call to my arthritis specialist...who is currently taking care of the FMS... Don't worry about the others...you have to deal with you...take care of you...
I don't think I've posted in this forum before but I had the pleasure of meeting and being diagnosed by one the docs who named and discovered fibro over 25 years ago. I think he was one of 3 who were investigating it. He called it fibrositis as he felt there was an inflammatory component to the disorder but his collegues won out with fibromyalgia to designate it as a pain syndrome. My diagnosis was later changed to my not having fibro but I have been interested it since.
I was recently in my neurologists office and read an article on fibro and the need for more neurologists to get involved with diagnosis and treatment as the first concrete double blind tests have proven that this is a disorder of the brain, specifically of the part that interprets pain signals. It shows up on an MRI.
So the next time someone tells you it's all in your head, you can agree and tell them it's in the brain. Your brain doesn't process pain signals correctly. Just like reflex sympathetic dystrophy(now called complex regional pain syndrome), fibro seems to be another type of pain gone wrong disorder where the pain signals fire off with the slightest stress to parts of the body.
There are all sorts of pain syndromes where we don't feel pain and in varying amounts(complete, partial, the numbness of neuropathy, etc.)and those get serious attention. Seems not feeling pain is important but feeling too much pain when you shouldn't gets laughed at....and it shouldn't. It's a problem just like not feeling pain and deserves the same amount of respect and treatment.
So tell those fuddy-duddies that it is all in your head....it's a brain disorder just like feeling no pain is....and you have the opposite problem.
I would like to thank all of you for your help and support. It is extremely helpful to know that there are people that can understand and validate me. I hope that someday soon I can help others as well.
I have been saying to people, "Oh how I wish you were right." and it actually shuts them right up! Then they mumble something and either change the subject or walk away! It's awesome!