8 Things Not To Say To Someone With Fibromyalgia

When I was diagnosed with fibromyalgia, the support of my friends was invaluable, but I also learned that there are 8 things you should never say to a fibro warrior.

8 things not to say to someone with fibromyalgia

“I feel so sorry for you.”

This implies that we are helpless victims. We don’t want a pity party, sometimes we are quite capable of having one of our own, we would love your support and friendship. Show us you care by spending quality time with us, listening to us and having a laugh. We are not defined by our illness, underneath the pain we are still the same people we were before.

“You don’t look sick!”

This is usually said in an accusatory or suspicious tone, since the speaker clearly has X-ray vision and knows more than our consultants. We are battling fibromyalgia, an invisible illness. We are brave fibro warriors who have to work hard to try and live normal lives.

“You look terrible.”

Yes, a friend said this to me. This was an insidious way to nudge my appearance towards a joyful, aesthetically pleasing ideal.  What was she thinking?

“It could be worse, you could have cancer.”

Don’t get me wrong, I’m very thankful I don’t have cancer – it’s a horrible disease; I lost my wonderful mother to cancer. I just think it’s insensitive to say that to someone who has a chronic illness. It’s as if we don’t have a right to have enough problems with fibromyalgia. I have no patience for disease comparisons like this.

“We all have aches and pains as we get older.”

Fibromyalgia is more severe than just aches and pains, it is characterized by widespread musculoskeletal pain and that pain can be electric like, stabbing, burning, grinding, piercing, crippling and vice like.  It is excruciating, intense and torturous when it’s at its worst.

“I read an article online about this cure for fibromyalgia.”

Repeat after me, “At the moment there is no proven cure for fibromyalgia!”

“My cousin’s best friend’s boyfriend’s sister has fibromyalgia and she can still climb Mount Everest/do 6 marathons in 6 days/work full time.”

Fibromyalgia is variable and can affect people in very different ways.  Please don’t make comparisons.

“Doctors? What do they know? You really must meet my homeopath.”

Herbs or vitamins are not a simple cure for fibromyalgia. We will leave medical advice to the professionals.

We know your heart is in the right place and you mean well. Living with this painful chronic condition is difficult. Coping with the pain, poor sleep, brain fog, fatigue and other symptoms can be debilitating, physically and emotionally. And a flare can temporarily put life on hold. Fibromyalgia can be very isolating so we need the help and support of our friends. Just ask us, “What do you wish people understood about how fibromyalgia affects you?” or “It sounds like it’s a really bad pain day, how can I help?” We’ll appreciate that you are trying to understand and help; it will mean a lot to us.

Keep smiling 🙂

Claire

x
UK Fibromyalgia

This entry was posted in Chronic pain, Fibromyalgia, invisible illness and tagged , , . Bookmark the permalink.

81 Responses to 8 Things Not To Say To Someone With Fibromyalgia

  1. Tori Gabriel says:

    A great list. To be fair though people who don’t encounter illnesses like this really don’t know what to say. I get quite a few of these with my Crohn’s. I try to remember they are honestly trying to make it better but in a clumsy way.

  2. Sarah Bailey says:

    Yes I totally agree with this – sometimes I look at people and think really.. If only you could hear yourself! x

  3. ‘You Don’t Look Sick’ must be such a hard one because a lot of people forget that so many illnesses might not be visible but it doesn’t mean the person is suffering x

  4. candicenikeia2014 says:

    Wow! thank you so much for informing me and all of us! I can’t agree more with this article! Sometimes people can be so ignorant. I love that you explained it clearly! xoxo

  5. Vicky says:

    This will be invaluable for sufferers of Fibromyalgia or any other chronic disease for that matter, I’m so sorry you are suffering, I hope they find something to help control the pain.

  6. I can relate to all of those. I don’t have fibromyalgia but I have rheumatoid arthritis and I get those things said to me all the time x

  7. Good for you Claire! People are so insensitive, and I know it’s unintentional but it hurts. You rock for carrying on the way you do when you are suffering, you’re certainly not a helpless victim – I think you’re inspirational. H x

  8. Lyndsey Hayes says:

    Hi Claire

    I love the latest post! Sorry if I’ve ever said any of those things and I hope that today is a better day for you in terms of health and happiness. I amused myself by thinking of the possible responses that I could make to these comments:

    1. I feel so sorry for you-Why? I don’t! Well, most of the time I don’t!

    2. You don’t look sick-You don’t look Stupid!

    3. You look terrible-Well, I didn’t want to say anything but…

    4. It could be worse, you could have cancer!-Don’t let people with cancer hear you say that! 🙂

    5. We all have aches and pains when we get older-True but not everyone has fibromyalgia.

    6. I read an article online about this cure for fibromyalgia-thank you but if my doctor thought this ‘cure’ would help, he/she would have already prescribed it for me. I’ll stick to his/her advice, thanks.

    7. My cousin’s best friend’s boyfriend’s sister has fibro and can…Bully for your cousin’s best friend’s boyfriend’s sister but Im not your cousin’s etc..

    8. Doctors? What do they know? Meet my Homeopath! No thanks! Homeopathy is not recommended by NICE for a reason (no medical training is required to practice it). I’ll stick with my doctor.

    Hope you like my responses (you know that I’d never have the guts to actually say them, right?)

    Lyndsey

    Sent from my iPhone

    >

  9. Ana De Jesus says:

    Well said I have invisible illnesses myself and people can think that you are not ill because you look healthy. Sometimes those who look ok are the worst off.

  10. The problem is people don’t always think before they speak or they don’t understand as they have not experienced the condition themselves so don’t understand.

  11. Liz Mays says:

    This is a helpful post. It’s hard to know what can hurt or offend someone when you’re not familiar with their experiences.

  12. It’s a shame that people always judge something they know nothing about.

  13. Lovely post. These are things you don’t say to anyone.

  14. Jenni - Odd Socks and Lollipops says:

    Ah I totally agree with these. It’s difficult, and they seem more upsetting coming from some people than others. I really get annoyed with ‘cures’ it was the same when I was pregnant and had HG and everyone always knew a cure – and now it’s the same all over again with the Fibromyalgia

  15. These are such important things not to say, I don’t think people understand sometimes

  16. I love how positive this post is! It must be annoying hearing all these things time and time again but it’s great that you’ve made clear you don’t want a pity party! x

  17. It’s certainly a disease that many misunderstand. You have an excellent attitude though. Blessings to you.
    Carol

  18. Mummy Matters says:

    You shouldn’t have to write a post like this really but some people can be so insensitive and say things without speaking.

  19. Kim says:

    Great post! I’ve heard all of these before. I agree with you, most people have their hearts in the right place and do mean well. But by posts like this we can help raise more awareness and hopefully guide those well meaning people into great support systems for their friends with chronic illness. Thanks for sharing this!

  20. I think this is a great list and great tips! It would be helpful for dealing with anyone with a chronic illness or chronic pain 🙂

  21. Charlotte says:

    People can be really thoughtless sometimes and there is always someone who thinks they know everything. x

  22. pjkuhn says:

    I said, “Amen” after every point. Wish we could copy this and put a flyer into every mailbox in the world!

  23. I know a lot of people give Fibromyalgia patients grief. But, we really don’t know how they feel until we walk in their shoes, so it’s best to stay quiet.

  24. Yikes! I can’t imagine people saying any of these things to someone suffering with fibromyalgia or any other chronic pain. A good rule to remember is that we don’t know what others are going through. Empathy and listening, support and encouragement are really all that’s needed.

  25. I know I’m guilty of trying to remedy people’s health concerns. It’s always coming from a good place, but I’m sure to the individual who is going through a health crisis, they don’t want my two cents. I mean I’m not a doctor. Thanks for a new perspective!

  26. Tina Ashburn says:

    This is very enlightening. I know I tend to say the wrong thing, even with good intentions. My cousin has fibromyalgia and doesn’t like to talk about it. Maybe that’s her way of coping. I did notice she doesn’t like to be hugged but she had no out-ward signs. She’s been approved for medical marijuana but has chosen not to use it (good girl!!). I will remember your words and try to be more sensitive in the future.

  27. Amy Jones says:

    Really good list. It’s important to keep your tact when talking to other people

  28. It is amazing what some people think is comforting. But it is often that we dob’t know we said the wrong thing until it comes out of our mouths.

  29. shoppingduck says:

    Great advice! Some people are just trying to be nice, but don’t know how to go about it.

  30. Lexie Lane says:

    Wow, nice list! It is hard to express how you feel for someone. I’ll take note of this.

  31. These are great things not to say. I think you should know better as well. Not everything that ails a person will show on the outside. I think you have to think , “How would it make me feel if I said…” and go from there.

  32. Alfonzowords says:

    Hahah I love this! such an eye opener and it can apply to more than fibromyalgia. People definitely need to be more aware of what they say and how they say it. Mad respect for this

  33. Taylor says:

    I don’t know anything about fibromyalgia; this great awareness for those who don’t know much!

  34. Maya | Wholesome Yum says:

    Thank you for this. My mom has fibromyalgia so it definitely strikes a chord.

  35. Elizabeth O. says:

    I think these also applies to anyone who is going through a tough illness even if it’s something we can’t really see physically. It’s important to be sensitive to what others might feel.

  36. People can be very ignorant but others aren’t intentionally doing it. This is a great way to teach someone the right and wrong things to say.

  37. Amanda Love says:

    Anyone with an illness should never hear these things, it’s just going to discourage them and make them feel bad for themselves. I think it would be better to just support them and boost their confidence!

  38. Nikki Jenner says:

    Very well said, not only for those with fibromyalgia but to everyone. Thanks for this.

  39. katykicker says:

    This is such a good post. Ignorant comments like these are the reason why I tend to keep my mouth shut now – so many judgemental people!

  40. Rosey says:

    I hate when people say ‘you look terrible.’ If it’s a good day and that’s said it can blow it fast.

  41. I think everyone reacts differently but most of them have really good intentions. Hugs. I think this is the best thing I can say now. Hugs and you have people who love you.

  42. Colette S says:

    A friend of mine struggles with it and so I’ve learned abit about it by asking questions.
    Great article.
    Thanks for sharing.

  43. These are things you shouldn’t really say to someone suffering from a chronic illness. We know they mean well, but they can be so insensitive at times.

  44. I think the “you don’t look sick” is one of the worst things people can say! And it applies to so many things!

  45. This apply to many similar situations! Would love a post about What to say.. we could learn how to manage this

  46. nicol says:

    yes i do agree. this is where “think before you speak” is more important. we shouldn’t say these regardless of what struggles others may have too.

  47. Linday says:

    I have endometriosis so I sympathize with the invisible illness. I appreciate any well-meaning comments even if they aren’t perfect. I don’t expect people to know exactly what to say perfectly but if they are at least making an effort, it’s the thought that counts.

  48. Mhaan A says:

    Haven’t met someone with the same illness but will definitely keep this in mind. Thanks for the heads up!

  49. Emily says:

    I always get the “you’re too young to have pains like that” or “look at you, you’re young, fit healthy you shouldn’t feel like that”.
    Never know what to answer with other than I shouldn’t feel like it, I wish I didn’t feel like it but I do.

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