Things You Should Never Say to Someone
Who Has Fibromyalgia
Someone you know and love has Fibromyalgia or suffers from some sort of chronic pain. And, at some point you’ve said something to them that hurt their feelings and made them feel worse.
You had no idea you did it. It’s unlikely that they told you.
Below is a list of things that you’ve likely said at some point to someone you care about, and in doing so you unknowingly made them feel even worse. Don’t do it again.
These are things you should never say to someone with Fibromyalgia (or any chronic illness).
Related: Symptoms & Signs of Fibromyalgia
1 . You just need to lower your stress level.
There are links between stress and pain, it’s true. However, while lowering our stress levels may improve our pain and fatigue, it won’t cure us.
Chronic pain is itself stressful. So, it’s a bit of a catch-22, making it difficult to lower one when dealing with the other.
Having someone tell us to lower our stress level is actually rather stressful, and just makes us feel worse. It reminds us of all the reasons our stress level is high and of why it’s so difficult to lower it.
2 . It can’t hurt that bad. –
You have no idea how bad it hurts. Your theory that because we aren’t lying in bed writhing in pain means it doesn’t really hurt that bad, is wrong.
We get up each day and do what we can, because we must. We learn to tolerate higher levels of pain than most people will ever feel, because it’s the only choice we have.
3 . It’s all in your head.
Medical studies have proven that fibromyalgia is not all in our heads. Just because there has been a lack of definitive diagnostic tests, doesn’t mean it’s any less real.
Fibromyalgia is real. The pain we experience is real. Just because they’ve yet to find what causes our pain, doesn’t mean we aren’t feeling it.
Related: Neurological signature for fibromyalgia found
Fibromyalgia is real. It's not all in your head. You aren't imagining it or making it up. Share on X
4 . It’s a “woman thing”.
There is a mistaken idea that only women suffer from Fibromyalgia, or chronic pain in general, it’s not true. Between 7-10% of those diagnosed with fibromyalgia are men, and that number is growing.
Fibromyalgia is often treated much like “hysteria” 100 years ago; that it’s just women wanting attention. Trust me when I say that we don’t want attention. In fact, we’d love to completely ignore that we are sick. But, we can’t.
Related: Why are so few men diagnosed with fibromyalgia?
5 . Just push through it.
There’s a misconception that if you just ignore it and work through it, it’ll just go away. It doesn’t just go away if we work through it.
Most of us spent years ignoring it and pushing through it before we even began the process of trying to find an answer for the pain.
Even after that we’ve continued to try to just work through it, but it only makes it worse.
6 . Why don’t you just take that medication they show on tv?
Those commercials on TV for fibromyalgia medications seem to imply that if we just take this pill all will be right in the world and all our limits will be removed. It’s not true.
Most of us have attempted to take every medication available, often with terrible side effects that make us feel even worse. The sad truth about pharmaceuticals is that to get approved they only have to provide a 30% improvement to about 30% of the people.
Related: Too many medications for fibromyalgia don’t work
7 . I get achy, too.
Yes, we know… everyone gets aches and pains. But, fibromyalgia (and chronic pain general) is more than just feeling achy. It’s more than just a single headache now and then, or a backache following a particularly busy day.
Unfortunately, chronic pain is not something you can possible imagine unless you live with it. The closest you can come is the next time you have flu, imagine that pain and fatigue you have never going away.
8 . I read about something that helps…. You should try…..
Yeah we read that, too. In fact, we’ve probably already tried it, or we are currently taking/doing it. Chances are we’ve spent a good amount of time researching that treatment and know more than our doctor does.
We appreciate your care and concern and that you want us to feel better, but we are doing everything we feel that we can do to feel better.
9. You just need to exercise more.
If we had a nickel for every time we’ve heard this we’d all be rich. There seems to be a misconception that fibromyalgia is just caused by not moving enough. It’s not true. There are people who competition runners who experience fibromyalgia.
While we need do to keep moving and keep our muscles stretched out, too much exercise (and especially the wrong kinds of exercise) can actually make our symptoms worse.
10. At least it’s not fatal.
Seriously!? Never say this!
You have no idea how often fibromyalgia / chronic pain becomes fatal when the sufferer can’t take the pain anymore and commits suicide.
Also, there’s more than one way to end a life. Just because you aren’t dead doesn’t mean your life hasn’t ended.
Chronic pain has taken many lives, both literally when someone decides they can no longer live with the constant pain, and figuratively when the life we've lived and ant to continue living is stripped away. #chronicpain Share on XAnd the worst one of all……
11. You look like you feel good/ You don’t look sick.
This is probably the worst thing you can say to someone with any chronic illness. Whether it’s Fibro, Lupus, migraines, or even cancer. How we look on the outside doesn’t matter because it’s not a reflection of how we actually feel.
Exactly what does how I look have to do with how you think I should feel? #butyoudontlooksick Share on XIf you love the person you are talking to, just don’t say any of these things. Doing so could not only leave them feeling hurt, but can lead them to feel anger and resentment towards you, possibly damaging your relationship. It’s just not worth it.
Related:
- The fibromyalgia treatments that have helped me most
- My favorite ways to cope with fibromyalgia
- How you can help someone who has chronic pain & fatigue
This post inspired by The Dirty Dozen Things Not to Say to a Chronic Migraineur
Debra says
Hi i read your article about fibromyalgia. I usually don’t look at the comments at the end of an article but happened to read others’ comments. I also have fibro and cfs. If the pain doesn’t do me in the exhaustion does. Some days I wake up for work and I’m in pain, usually if I don’t sleep well, and am really exhausted. I call off work about one to two days every two weeks. Sometimes one day a week. I’m on intermittent FMLA from my job which helps protect me from calling in sick. My manager is very understanding. Mostly everyone in my office acknowledges that I have pain issues, but I still feel inadequate at times, I feel I’m not pulling my weight. Like everyone else has to do my job cause I wasn’t there to do it. I know I shouldn’t feel that way. There isn’t anything I can do about it. I struggle each day to be able to even get to work and finish out my day and go home to rest. One day at a time. I’m 63 years old. Can’t afford to retire yet. I’ve suffered with pain for over 20 years. I’m counting the days till retirement. And it’s not because I don’t like to work, which I really truly do. But the daily pain is wearing me down.
Denise says
I can relate to every single one of these. You are right when you say that people who don’t have chronic pain just don’t understand. One I would like to add “If you think you are in pain now.. wait until you are my age!” I heard this from a few elderly women at church, very judge mentally, often. I only share medical info with those I’m really close to. I finally put a stop to one woman’s insinuations about looking forward to being her age by answering “I’d look forward to that, except I’m never going to make it to your age”.. She has never said that to me again. Sometimes, even trying to educate, you have to pull out the big guns.
Ac says
I ligit cried when it mention ppl ending it due to it being unbearable. I love my life and my family if I didn’t have them I would have ended it. I’m scared it will get worse if I’m thinking that already and I’m only 25 and suffered I feel my whole life. I feel like I’m a failure as a mom and wife because I cant function. We r also low income and my hubby is the one supporting me and our daughter. So we cant afford alot and cant afford therpy6if I go down a dark path again… I’m writing this 12:30 am cause of pain is keeping me up…
George-Ann Wood says
I have a question. Is there any way to share the article about what not to say… If so, how? Thank you!
Julie says
If you are on a computer you should see share buttons on the left side of your screen. Otherwise you can always copy the URL from your browser’s address bar and paste it into wherever you want to share it.
Runaway Train says
#7 The single most encouraging thing I’ve ever heard from a non-spoonie was the exact opposite of this. I was explaining to a friend in his forties how, until I started some meds just before diagnosis, I thought the aching all over was what people meant by ‘everyone has aches and pains’. I was 25 at the time, and his response was ‘well, at my age maybe, but not at 25 they don’t!’
Ac says
I been suffering since young I’ll be 25 soon and this is exactly how I feel. Fatherlsw thinks I’m lazy and cant be in that much pain.
Tracy says
or “You look like you are doing a lot better!” just because I am having a good day.
Julie says
I know, right!? Thanks, I bothered to get up and put make-up on this morning in an effort to try to make myself feel better. I’m glad it worked on someone!
Annette Finch says
I know what you mean about the make up!!! People say, in one breath “How do you feel? You look well!!! I was very ill last year. I have had chronic back pain for almost 30 years, and last year had an implant put in, and got VERY ill 4 days later – had gall bladder removed as well as 3 ops to remove gall stones – my liver was failing. Went to see surgeon for follow up visit, and recep said “You look well” and I told her, “Yes, the makeup can hile what the blood test cant”
Regards Annette
Julie says
Thanks for sharing Annette! People can be so silly at times. And welcome.
Lisa says
I too suffer from fibromyalgia, chronic migraine. I call putting on make-up my war paint. You are literally a warrior going out to face the world. You go girl!
Claire says
great list. I want to add “we all have our cross to bear”.
Yes, many people experience illness and tragedy in their lives, but comparing problems helps no-one, and only serves to undermine someone’s pain.
Julie says
Good one Claire! You just made me think of another one,
“God never gives us more than we can handle.”
George-Ann Wood says
I don’t think that is even used in context or is not even in the Bible…brain fog bad today so I cannot really remember which it is. If God doesn’t give us more than we can bear why are there so many suicides by people who do believe in God?
Katherine says
I was recently accused by my sister(s) that I am “Faking” my illness. I have Fibromyalgia and ME as well as Osteoarthritis through out my body, Spondylitis, Endometriosis, Parathyroid Disease, Mgus and a whole host of other conditions. I see them rarely because they are narcissistic, rude and toxic. I had to see them for a family matter and instead they turned it around and attacked me instead of dealing with the issue we were there for. All because I looked presentable, put some makeup on that day and try to always look my best. I am so tired of people making assumptions about others by the way we look. Every step I take I feel pain, I have learned to live with it and try to live my best life. I have decided that family or not I will not subject myself to ignorance and abuse ever again. The last thing people with Invisible illness need is to be judged by their appearance and especially not by their own family!
Julie says
Amen to that! It’s hardest when it’s family because a) they are supposed to love us no matter what and b) vice versa. But, loving them doesn’t mean we have to put up with their shit. Sometimes it means loving them from afar and wishing them the best for their lives while not letting them negatively impact our own.
Hugs to you. I’m so sorry you have to deal with this.
Paula says
I know exactly what you mean. My brother in law is also my boss and is very hard on me. He keeps telling me about others being much worse off than me and and just get on with it. I have a list of others conditions too, migraines, thyroid disease, depression, eye disease and I try to ‘get on with it’ but being shouted at everyday and told I’m lazy really doesn’t help
Trisha says
Great list! I’ve heard a few of those and I think the exercise one might be the one I’ve found most insulting. I don’t get why people just assume that we don’t exercise. If they lived in my neighborhood, they’d see me out limping around with my dog every day of the week!
Julie says
I blame the doctors, and their lack of knowledge, it trickles down. Since doctors are convinced that exercise will make us feel better everyone else hears that and assumes we don’t exercise. Gentle slow exercise can help, but it’s not a cure. And, there’s some days where exercise just isn’t an option, and limping through the house just back and forth to the bathroom is as good as it’s going to get.