What You Should — and Should Not — Say to Someone With Fibromyalgia

What You Should — and Should Not — Say to Someone With Fibromyalgia

Through the FogBefore I was diagnosed with fibromyalgia, I would have been at a loss about what to say to someone with a chronic illness. It’s not because I didn’t care, I really just didn’t know. I think the same may be true of those in our lives who appear to be insensitive or rude in their remarks. They just don’t know.

I want to help those people learn to say “this,” but not to say “that.”

You could say … It must be so hard to be housebound most days. I can’t imagine what it would be like to not do all the things I want to do, like visiting and shopping. Don’t say … It must be nice to stay in your jammies all day and just lay around watching Netflix. I wish I could do that. (They might for a week or so, but I’m sure they wouldn’t want the pain and fatigue to go along with it.)

You could say … I would love to bring you a meal. Can I pick up anything for you on my way over? I’d be happy to pick up some groceries or stop at the pharmacy for you. But don’t say … It must be nice having people do your errands and cook for you. I wish I had a maid or servant. How lazy can you be?

You could say … Wow! I had no idea that fatigue could be so devastating, or that sleep could be so elusive. I’ve never heard of “painsomnia,” but it sounds dreadful. But don’t say … Everybody gets tired and has off days. Take a nap or get to bed earlier. If you get enough sleep you’ll feel better.

You could say … I’m sorry you can’t be involved in the physical activities that you used to enjoy so much. That must be devastating. But don’t say … If you would just exercise more I’m sure you’d feel better. Don’t you know that exercise will give you more energy?

Things you shouldn’t say come across as accusatory, judgmental, unwilling to try to understand, sounding like a know-it-all. The things that you should say come across as compassionate, caring, helpful, and convey a willingness to understand. Which do you believe would be most uplifting?

You also could just ask sincerely what would be appropriate to say. We will be happy to tell you. We want to be understood. We want our pain and other issues to be acknowledged.

Fibromyalgia is an invisible illness, so it’s hard most times to see how we are suffering. We put on a brave face and say we are fine when we’re asked. But it’s exhausting trying to defend how we really feel.

7 comments

  1. Kim Nichols says:

    I know exactly what you mean. Just the other day my mom said to me “everyone has some pain, I just work thru mine” I could have screamed. She should know better. I’ve run several businesses, worked several jobs @ a time, raised 2 childred alone and I’m no slouch, so she, if anyone should know how devastating this must be for me to lay around. Empathy Please!!!!

  2. Denise Bault says:

    I’ve had a lot of people in my life “just not get it.” Notice the past tense. They are gone. Either their choice or mine! It is so bizarre to have a chronic “invisible” illness that people do not understand – including ourselves. I certainly have a lot more compassion for those with illnesses with which I am unfamiliar…thanks for another great article, Robin!

  3. Lillian Ward says:

    I wish I had the empathy of my loved ones, but all I get is heartache. How do I get them to understand? I’ve been living with Fybro for 16 years and I take a lot of meds for other health problems, I’m not lazy and never have been but I’m down now with nothing but insults. What to do?
    I am lost and can’t seem to find myself. Where do I go for help?

    • Tim Bossie says:

      We are truly sorry for what you have to battle in your life along with your health problems and fibro! It is so discouraging when even those in your family do not understand the pain and the problems you face each day. What is the best thing to do? I wish I had an answer for that. For every situation it is different. For some, you can talk to family members. For others, it is best to grin and bare it. Try to talk with your closest family members more – not to ask for sympathy – but to, as lovingly as you can, tell them the pain your are in… both from the fibro and their insults. This is not easy by any means, and may cause more emotional pain, but a consistent message is always the best approach.

  4. TH says:

    I’ve been living with FM for years, I had it even when I didn’t know what it was. My family is supportive for the most part except my husband keeps telling me to push through and to exercise. I truly believe he doesn’t understand but how can he really. I have good days but then I have days that I just feel like I can’t get out of bed, just taking a shower sucks all my energy out of me. If i think too much I’m scared for the unknown future. I’m truly thankful for every good day.

Leave a Comment

Your email address will not be published. Required fields are marked *