We know that in addition to suffering the actual pain, fatigue, and fog of fibromyalgia, many patients also suffer from the stigma associated with having a chronic disease. We asked our readers for some of the more hateful examples of what people say to them. Be warned, some of this stuff is just heartbreaking. But it’s important that we bring this into the light. We had such an overwhelming response we decided to share some of them.
A quick content note/trigger warning: Some of these things are really hateful. We post them in the hope that they can be shared with people who are likely to say some of these things and think twice about saying them, but they could also be traumatic for people who hear things like this in their daily lives.
1. People with fibromyalgia are just lazy
This is a killer, and the vast majority of our respondents mentioned being told they just “don’t want to do” stuff.
That i’m lazy i play up to my fibro and its all in your head and you can do more than you think you can!
Lazy, everybody hurts. Everyone has arthritis. You need to exercise, you need to walk. Blah blah blah.
My 17-year-old son broke my heart, he said I wasn’t sick I was lazy. Even though he hears me cry in my sleep in pain threw two walls. I’m 53 and have to use a walker.
They have told me I was just lazy that I got up and moved around I would feel better or its all in my head if I would find something to keep my mind occupied I would be ok.
“Child protection services took my 5 children. On court records, the judge overruled me and my doctors and expert witness and said that it wasn’t a disease and I was just lazy.
Lazy, a waste of space, nothing wrong with me, so why would I want to leech off the government with wanting to get disability?
My ex husband told me I was a lazy sponging c$&t that I wasn’t contributing financially or around the house enough after much abuse I found out he was cheating and he left.
As you can see, this is very common and hurtful. In fact, people eamil Fibromyalgia Treating just spew this kind of hate. For example, this person got themselves so worked up they finished in all-caps:
you weak individuals are just looking for a quick fix, a simple cure, there isn’t one, very over it (sic) and care for yourself, lol no medication is going to help ANYONE with fibro you have to actually get off your ass to help yourself. Why not post TRUTH like that? Stop peddling trash. YOU ARE MISLEADING. I UNFOLLOWED YOUR TRASHY BULLSHIT PAGE AND I’LL KEEP REPORTING THOSE POSTS AS MISLEADING. HAVE NICE DAY. (sic)
We did have a nice day, and banned this person, too. But this person’s comment touches on our next type of hateful comment.
2. Fibromyalgia doesn’t exist
A classic that everyone’s heard, and it’s so hard because that maybe we should have made it the number one hateful statement because it’s the basis of all stigma against people with fibromyalgia.
I saw a doctor for a different medical condition. Once he saw Fibromyalgia listed on my medical chart he made a point to tell me “I don’t believe Fibromyalgia is a real thing. The doctors that do these days should have their license reviewed. It simply does not exist. What meds are you taking for it?
It’s an awful disease. I put my brave face on 24/7. No one can see our pain and suffering, so they question if it’s real or we’re just attention seeking. It’s much easier to pretend I’m ok, than it is to explain why I’m not.
3. It’s all in your head
This is closely related to the “doesn’t exist,” but it’s a much more explicit way to gaslight fibro sufferers.
That i’m lazy i play up to my fibro and its all in your head and you can do more than you think you can! And people have said i don’t want to hear it and we all have problems. They should step in my shoes for a day !!
They’ll say things like “you ain’t sick it’s all in your head” or “it doesn’t look like you’re in pain” makes your heart ache with tears that nobody will ever understand you.
They have told me i was just lazy that i got up and moved around i would feel better or its all in my head if i would find something to keep my mind occupied i would be ok.
As you can see, people are cruel and they like to use more than one category of hateful comment.
4. You Don’t Look Sick
Since fibromyalgia is an invisible illness, people who have it often don’t “look” sick, whatever that means. It’s also one of the most frustrating things a fibro warrior can her.
You don’t look sick. Look at you, you’re a runner. No way it’s that bad. Suck it up…. I’ve lost 2 very good paying jobs because of my faked illness.
I went to a concert at a stadium to be told I don’t look disabled and that fibromyalgia is just a figment of my imagination to scam the tax payers, needless to say we left the concert and headed straight home, wrote a letter of complaint but never even received an acknowledgement from them.
This women came to the car and said you can’t park There? On showing her my disability disk she said neither of you look disabled and it was disgusting that we were able to have a car???
5. God is punishing you for your sins
These people take victim-blaming to the next level by making illness a judgment on a person’s moral character. It’s shameful.
My uncle, who is a preacher, told me I was being punished by God for all of the wild things I have done & my family wonders why I don’t believe.
The rudest thing I have been told is GOD is punishing me for my sins. I know a lot of good Christians that died of cancer…I don’t think they were punished either. How dare they say this to me?
6. You’re just trying to get drugs
This is also a sad side-effect of the opioid crisis in the United States. We assume anyone in pain is just trying to get pills.
I’m lazy, good for nothing, will do nothing with my life, I need to do more, im a pill popper (I have a hard time taking meds unless I have too) and my favourite is I’m faking everything!
I’m not sure but to day I was left feeling like a addict over Tylenol. I am 54 years old when do you stop defending yourself. It made me cry.
I work with my mom and I was having an awful pain day. Around lunch time I had finally had it and I couldn’t hold back the tears. I was crying and crying as she spent 10 minutes telling me to suck it up and go back to work. I told her I needed to go home and take my meds to which she said ‘I think you’re just addicted to your meds.’
I was called a drug addict at one point because I was on so many medications. I felt like I might as well have been shooting up with the way people looked at me.”
I’ve had a receptionist look at my file and count my meds telling me I should still have plenty left, would never greet me, and I finally told my Dr after months and he got so upset with her and told me to tell him those things straight away, she has no right to be doing that. He sorted her out and also the pharmacist that would comment on my meds and how much I’m taking, without knowing my many medical issues.
7. You just need to exercise and lose some weight
This is similar to the “You’re lazy” and “it’s all in your head” with the added bonus of weight-shaming. It’s despicable. Here’s what our readers shared:
I have had to deal with uneducated Dr.s who were insensitive however , saying things like, Well, if you would lose some weight and get out and exercise you would be ok and this condition isn’t really a condition!
Just exercise and lose some weight and you’ll feel better. Or you sound happy to have that diagnosis, are you just looking for excuses.
“Well maybe if you lost weight and exercised you’d feel better.. THANKS SIS.. love you too.. maybe if she knew that the majority of the over 20 pills I take daily cause weight gain and bloating.”
Eye rolling while telling me ‘oh I don’t believe in all that crap! If you just exercise and diet you will start feeling better. Lose some weight and you’ll feel better. I would be in pain too if I just laid around all day.’
Lose weight, you are too big, that’s why you are in pain, you carry too much weight on your body.’ ‘You need to move around and exercise.’ I’ve been told this many times.’
Family member told me to just suck it up. You don’t need your Lyrica . You don’t look sick you’re just over weight…… U dont go out enough….. It’s all in your head……
8. You just want attention
People love to break out their arm-chair psychiatry degrees for this one. Munchausen Syndrome is a real thing, but so is fibromyalgia. People are so rude.‘Attention seeking’
‘It’s in your head’
‘It can’t be that bad’
‘Stop being lazy’
‘You need to go out and exercise more’
‘I did this with that and that’s worse’
‘Are you sure you’re not putting on?’
‘You’re always sick’
Was in hospital with the worst pain flare up, had so many tests and they all came back normal!….so the dr said to my dad does your daughter like being in hospital??…must of thought the blue curtain around my bed was soundproof.
You just want attention. There’s nothing wrong with you. You’re a hypochondriac. You just need some exercise and to lose weight. These are just some of the things I hear!
9. That’s all you talk about
This is a big one. People are afraid to talk because they’re met with eye-rolls or worse. Here’s a tip: If you don’t want to know how someone is doing, don’t ask.
I can’t talk about how I feel….I always get the same comment…you always say your not feeling well…like it’s something I’m making up.Each day is different and can be a struggle.. It’s hard when people around you don’t understand how your feeling and don’t want to hear it and don’t really care.
10. Oh yeah, that sucks, but it’s not as bad as this
There are some people who can’t just empathize. They have to outdo your pain by telling you how bad they’re hurting.