If you live with fibromyalgia, you may be familiar with some of the “harmless” comments people say to those who are struggling. Oftentimes these remarks from family and friends are well-intentioned, but a lack of understanding about fibro and how it affects you may result in their statement totally missing the mark.
We wanted to know what “harmless” comments people with fibromyalgia have heard that actually hurt them, so we asked our Mighty community to share one with us and explain what it feels like to hear it.
It’s important to remember that even well-intended comments can be hurtful and damaging. Regardless of what anyone says, your experiences with fibromyalgia are valid, and you are deserving of understanding and support.
Here’s what our community shared with us:
1. “You don’t look sick.”
“From an occupational therapist: ‘You don’t look sick… have you tried Pilates?’ (Just after measuring up for a bath board and me asking for a walking stick.) So frustrating.” – Bambi G.
“If you put on makeup to go out in public, people say, ‘Oh, you look like you’re feeling good!’ No, I was a makeup artist back in the day… I can make a corpse look good, but it’s not going to get up and dance.” – Deborah M.V.
“‘Well, you look fine.’ I get this one quite a lot. I’m falling apart on the inside even if others can’t see it. I know it’s often said but it’s true – I’m not faking being ill but I am faking being well.” – Kirsty R.
2. “You’re not praying hard enough.”
“My former doctor told me I wasn’t praying hard enough because if I were I wouldn’t have fibromyalgia. For quite some time after that visit, I thought fibromyalgia might actually be just in my head. I kept my pain and depression to myself years after that. If a doctor didn’t believe it was real, then how could my family and friends?” – Kerri O.
3. “Just think positive.”
“Positive thinking… ‘Just think positive and you’ll be OK.’” – Monica B.
4. “Doesn’t everyone feel tired?”
“Once when I described the symptoms of fibromyalgia to my husband’s friend, he just looked at me and said, ‘Doesn’t everyone feel tired and run down?’ Then he laughed. I felt completely invalidated in my diagnosis and my daily pain.” – Virginia R.K.
5. “I just get on with it.”
“The words ‘Well, I just get on with it’ – said to me from (of all people) another chronic severe pain sufferer. Even now it sticks with me. It’s basically a way of invalidating the recipient’s pain, while trying to make themselves look better.” – Leon M.
6. “Sleeping that much is probably making you more tired.”
“I always get ‘You know, sleeping that much is actually probably making you moretired.’” – Sydney L.V.
7. “It can’t be that bad.”
“My husband was diagnosed and denied his short term disability through his policy he pays for. This means we are struggling financially. A lady at work said there was surely something he could do sitting at a desk because it can’t be ‘that bad.’” – Ashley H.L.
8. “You just need to exercise more.”
“I had a doctor tell me I needed to be more active (with [debilitating] pain) and wrote me a ‘prescription’ to take to a fitness center. I was so ashamed when I left his office, I felt like I wasn’t doing my part to feel better.” – Jessi E.
“A nurse once said [I] need to lose weight. When I explained I had fibromyalgia she just looked at me and said, ‘So do I and I cycle to work. You should exercise to stop the pain.’” – Sarah B.
“I had a doctor tell me to ‘go take a walk, kiddo,’ as if my pain will be resolved from exercise alone.” – Amanda L.V.
9. “You’re too young for that.”
“‘You are too young to be worrying about your heath.’ I have to when my ill health is punching me every day!” – Kirst F.
“‘You are too young to understand. Wait until you’re my age, then you’ll know what pain is.” – Heidi J.
10. “It’s all in your mind.”
“‘It’s all in your mind.’” – Lakshmi R.
“My sister said she ‘doesn’t believe in it’ and that she ‘doesn’t think I’m in pain.’ She seems to think I’m totally normal. WTF? We’re not speaking right now. I don’t need toxic people in my life!” – Jennifer P.
11. “It will get better with time.”
“Doctors would say to me, ‘It will get better with time’ before I was diagnosed with stuff. I would get so angry because I would keep going back and saying it’s not getting better with time.” – Luke W.
12. “My friend’s coworker had an aunt with your illness and he got cured by…”
“‘My sister’s neighbor had a brother with your illness and he got cured by doing/taking…’” – Vivian K.
“‘You should try eliminating dairy/gluten/meat/nightshade vegetables/etc. from your diet.’” – Frida S.
13. “Maybe you are just depressed.”
“‘Maybe you are just depressed,’ I was told daily. I think anything that goes along the lines of ‘why don’t you do this or that or maybe it’s just this… blah blah blah’ can be hurtful because it totally dismisses the struggle.” – Capricia D.
14. “You’re just getting older.”
“Before I was officially diagnosed, usually from my parents: ‘Oh I’m achy/forget stuff/tired all the time – you’re just getting older, don’t worry so much about it, it’ll only get worse the older you get!’ (Always said with that ‘knowing’ chuckle.)” – Allie H.H.
“I’ve been told I just feel bad because I’m getting older.” – Teresa W.F.
15. “You were fine yesterday… How are you so sick all of a sudden?”
“‘You were fine yesterday… How are you so sick all of a sudden?’ Yep. I know. It frustrates me too.” – Robin M.
16. “How bad can it be?”
“I’ve been told to ‘get over it and move on… It’s not like you’re going to die from it. How bad can it be?’ I couldn’t believe my family member would say this to me. She also asked if I thought I was more important than everyone else because of my illness. Anyone who knows me knows I put everybody else’s needs and wants before my own. I had to pick my jaw up off the floor… there were no words.” – Julie H.C.
17. “If you just ignore it, the pain will go away.”
“‘If you just ignore it, the pain will go away.’ My thoughts were: if your body felt like it was beat with a baseball bat, could you ignore it?” – Sheri S.
18. “Why are you never interested in doing anything?”
“‘Why are you never interested in doing anything?’ Yup, I choose to live my life on the couch!” – Em L.
19. “You’ll get through it.”
“When I told a friend about having a fibro flare-up, I was told, ‘You’re a strong person; you’ll get through it.’ As ‘harmless’ as it may have seemed and as true as it was… it was not something I needed to hear at the moment.” – Coley P.F.