We asked to our community “Living with Fibromyalgia and chronic illness” a question “What Responses you Receive After Telling People that You Have Fibromyalgia”. Community participated in the questionnaire and share their experiences with us. Mostly they hear that have your tried acupuncture, cannabidiol oil, have you talk to your doctor about commercials medications, medical tests?, do you get kids and what you do then
This is what community share it with us:
1. Kellie Dean Duckworth says: Most think it’s a fake illness If I say chronic fatigue syndrome. If u say fibro they say they think they have it too (ugh) it’s better to keep it on the down-low.
2. Janet Korst says: Oh I’m not even sure you can count it as a response. They normally just continue talking like you never even said anything or just say oh and then try and change the subject.
3. Faith Bennett says: “What doctor are you seeing?Youre not seeing the right one.You should see mine”grrrrrr….Or “maybe it’s depression ” and my personal fave,”How come no one in the family has it but you?”Most of my family thinks I’m lazy or looking for attention or excuses not to attend family functions.They think I exaggerate and there’s a pill for everything and I’m weak & need to “suck it up”.
4. Tammy Tackett says: I been told by my sister whose an RN thats its just a fancy name for a few aches and pains thats usually in your head anyway.
5. Lisa Newman-Thomas says: Its like really? You dont look like you are sick. I think alot of it is in your head. Lots of negative comments and loads of nasty eye rolls. They have no earthly idea what this horrible disease does to a person unless they have it themselves…. The weight gain is a struggle all in itself.
6. Vonda Ngigi says: I don’t usually tell people. Why would I? Even if I told them I have another more commonly heard of disease, which I do, they never say anything or they can’t understand it anyways so no purpose in telling them what diseases I have. I just live my life the best I can. I don’t wake up in any day looking for anyones approval but God’s.
7. Cynthia Lee Jaskiewicz says: You should be remarried, but who wants a sick person I say. It’s hard on them..i can’t run n play like them. So I become a loner and found other I’ll friends..we do are small things ..and complain. But it’s true , I hurt ..what do you say when asked to do something you can’t do. You tell them why. I also have RA AND back lower disk and neck pain. I’m handicapped..would be nice to date
8. Becky Riggs Muday says: In the beginning they almost didn’t respond at all. Just carried on with the conversation like I never said it. And when I first posted about having it on line, nothing, not a single supportive comment. But now that I have read more and understand it better I have started explaining what exactly it feels like and what is happening in my body, my friends have been more responsive and understanding and supportive. And I kept posting on FB and now more people respond, ask questions and offer support. Now people ask how I am feeling and have been excited for me that I have found LDN to be so very helpful. I had some embarrassment in even telling people I have it. Because of the negative perceptions of the illness.
9. Bev Watkins says: What is that? Is that a real sickness? Go to a chiropractor. You’ll feel better if you go to one. Aren’t you to young to have fibromyalgia?
10. Kim Hankins says: Your too young to have fibromyalgia, your don’t look sick. I’m 44 and there have been many times I was in Walmart on their scooter and the Nast rude comments it’s horrible. This is a struggle is real
11. Kelly Campbell says: “Yeah, my back’s killing me” “must be great to lay in bed all day” ‘my father’s brother’s nephew’s cousin’s former roommate had that. She drinks nothing but water and wheat germ and is completely cured!’ “Yeah I’ve heard of that. You’re supposed to exercise more, right?” And my personal favorite, “I think I have that too. Just a touch of it, but not nearly as bad as you!” And my actual melt-my-heart-favorite was when i told my best friend he gently took my hand and said “how do we best treat this? What’s the best way to make your life better?” (That was 5 years ago, and we’re getting married in July!!)
12. Cathi L Roberts says: I have been told it’s not a real disease, it’s a term doctors now use for hypochondriacs, and lose weight and you can get rid of it. When asked how it feels, I tell them it’s like having thousands of toothaches all over your body at one time
13. Julie-Ann Watkins says: Most people I tell actually know what it is and applaud me for working and getting on with life. Then again, I usually don’t tell anyone unless they share that they have it too. Then we can compare, console and help each other. It is very hard for anyone who is active to understand and believe. I look at people my age and older and wish I could do what they do. Oh, well, just keep on keeping on, suffer in silence when I am at home and can rest. Hugs to you all, you are doing a great job to be you.
14. Lori Gath says: “Are you sure?” “How do the doctors know?” ” You look fine to me.” ” I don’t have that, I’m perfectly fine, how can YOU be sick?” “Just don’t give into it, if you think yourself sick, then you’ll make yourself sick.”
15. Susan Mancino says: “It can be treated with meds. What’s the problem? Sometimes we all have to just work through our little aches and pains. What do you mean you have to cancel & I should have known you wouldn’t make it!”
So what you hear when you told someone about your illness, share your experiences with us in the comments below.
My two most hurtful responses are, “Cancer sure makes your illness look like a walk in the park.” And “At least you aren’t on crutches.”
They don’t realize it’s not a competition. This crap is a horrible disease as most are. No need to compare.
I don’t have it my wife has it. It is debilitating it puts stress on relationships.Its not imaginary I see it every day. They say you don’t look ill.. You can see pain, it is etched on a persons face if you care to look. Until you have it don’t give opinions on it,how can you know.
I don’t have fibro, but I have lumbar spine issues. My son is the one that gets me with, “no pain, no gain”. grrrrrrr
I always get ” you are just feeling sorry for yourself. Good excuse to not do anything. Just get out of bed and do something, moving around will feel better. You don’t look sick, it’s all in your head, I never knew you were this lazy. It’s not like you, just get over feeling sorry for yourself” it makes you feel guilty, so you push yourself to do things and man do you pay for it the next couple of days. So I just lie” I’m fine,how are you?” Is my basic line.
When I first got it , in 1992, I saw 5 different doctors in NJ. They said there was nothing wrong. Then I went to the Mayo Clinic, thinking I would be cured, and they said I needed a psychiatrist. I just cried.
I’ve had two dr.s tell me it was all in my head and gave me referrals to a psychiatrist. The first time I was told that was in my early 30’s and the second at 43. There for a while, I thought that I must be messed up in the head pretty bad to imagine the symptoms I was experiencing. For the longest time people thaught I was an air head because of trouble with focusing and recalling memories plus having trouble speaking by combining two different words into one. Anyway between the pain, fatigue, financial trouble and cognitive troubles I came to the conclusion that life wasn’t worth the pain anymore and descided to take my own life so I took a hand full of pills. I failed at the attempt and that landed me in the psychiatric hospital with a permenant note on my file saying not to give me any more pain medicine. After that My ex got custody of our kids. All this time I was fighting like a mad woman through all the fybro symptoms without anything to get my kids back. It took me three years to get my kids back. It took years later of no help before I finally met a dr who believed me and didn’t look at me like a drug seeker. For once, someone believed me and I had a glimmer of hope. I am currently on a mixture of neurontin, cymbalta, and tramafol for pain. Unfortunately, it doesn’t offer much help with the pain and fatigue but at least for once in my life someone believes me. Since then I have found out that my aunt has fibromyalgia too and she said that she knows I’m in pain and since then my dad now believes me. Im remarried to a good man now and life is still a struggle but I don’t feel so isolated and alone anymore.
My is I go to my pain doctor and he asks me how I doing so I start telling him and he tells me well you brush your hair and you got here and u look at him and like to tell him a few words about brush my hair I don’t I pull it up so it don’t show that really I didn’t brush it because it hurt to brush my hair. And to get there it took everything to go to my appointments. For the pain doctor to say that it make me mad. I just smile at him and go home. It’s hard to tell people how we feel until they walk in our shies
The main thing I hear is “I know someone who has that and she still works!” As if because she works I’m just being lazy and don’t WANT a better life. I have back and shoulder issues unrelated to fibromyalgia but even still, I don’t feel I should be backed into a corner about why I can’t work based on someone else having fibromyalgia that I don’t even know.