10 Things Not to Say to Someone with Fibromyalgia

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Having an invisible illness, as some call it, is hard enough without people offering “helpful” advice. Heck, there are still a lot of people that think fibromyalgia is all in our heads. If you have fibro like I do, we can assure you it’s not in our heads. The physical pain can be both excruciating and debilitating. The exhaustion and brain fog are difficult to describe.

I think every fibro sufferer could come up with a list of the top comments they’d never like to hear again, but here’s mine:

  1. You just need to get up and moving. Yes, that’s it. The problem is that getting out of bed is often a big enough ordeal. When you wake up with a numb, yet painful, arm, hip, and hands, your first thought isn’t “let’s just right out of bed and get moving.” While I do firmly believe that exercise and even light stretching can really help, but first thing in the morning is very difficult. It takes time for me to get out of bed and get going.
  2. You’re just getting older. I’m 41 (soon to be 42). I refuse to believe that’s old. Fibromyalgia doesn’t mean it takes a little longer to recover from your workout than you did at 20. Guess what? I know plenty of people in their twenties with fibro. Fibromyalgia isn’t simple aches and pains of the day. It can mean high sensitivity to touch, crippling muscle pain, migraines, fatigue, and joint pain.
  3. Maybe I have that. I’m tired a lot, too. While exhaustion is one of the symptoms of fibro, just because your life is over-scheduled and you are tired running after your children does not mean you have fibromyalgia. Every parent is tired. Everyone who works at a stressful job is likely tired. Tired doesn’t describe what it’s like to have fibromyalgia. It’s exhaustion beyond belief. It’s your body telling you that if you don’t rest, you’re going to be out of commission for days.
  4. You just need to get out of the house more. Guess what? I’d love to get out of the house more. I work from home and that was a choice I made after being laid off from small corporate America. Honestly, I feel very blessed that I’m able to work from home because I’m not sure I could do an office 9-5 anymore. I didn’t have fibro and RA when I was working in an office. I didn’t wake up with fingers that I couldn’t move for several hours at a time. I’m sure that would go over well in an office! I get out of my house as often as I can. Trust me when I tell you, I look forward to days when I feel well enough to go to an event or even just go to the store.
  5. I heard they only diagnose fibromyalgia when they can’t find anything really wrong. No one wants to hear that your doctor doesn’t believe fibromyalgia is a real disease. Anyone suffering from it can tell you the pain is not in their heads. The swelling in my hands and feet are not in my head. I’m suffering from this horrible disease and you are not helping by telling me it doesn’t really exist.
  6. Are you sure it’s not just depression? I can tell you that it is darn depressing to be in pain most of the time, but feeling depressed because you are unable to do the things you used to be able to is normal. I don’t need to talk to a psychologist about my pain, though I know many people that do. I just don’t think people should offer this suggestion because again it goes back to the disease being all in your head.
  7. Have you tried blah, blah, blah? Let me ask you this…if you were in constant pain, wouldn’t you do every bit of research you can to find a way to ease the pain. If you think I’m dumb enough not to have researched both natural and pharmaceutical products to help ease my symptoms, you are sadly mistaken. I’m sure you think you’re suggestion is helpful, but I hear these suggestions more than you realize. It gets old.
  8. That’s the disease on the commercials for the drugs with the terrible side effects like death. Gee thanks for the reminder. I happen to be contemplating taking one of those drugs at the moment, and I, too, hear the list of side effects every time I see those commercials. I know people that have had many benefits from using drugs like Lyrica and Cymbalta. I’m weighing my options and discussing the pros and cons with my doctor. You watching a commercial and reporting back on it doesn’t really factor in to the difficult decision of taking a prescription drug.
  9. But you never feel well. It’s hard enough not to feel well most, if not all of the the time. I don’t need the reminder that we’re never feeling well. What I need is a friend or family member that will listen without judgment. I need someone to just listen. You aren’t going to be able to fix the problem, but I am suffering from a disease with no cure. Different body parts are hurting all the time. Don’t ask how someone is feeling if you don’t want a real answer. I’m not humoring you with “fine” when I feel like hell.
  10. You don’t look sick. I wrote a whole blog post on this subject so I’ll keep my comments short. Having an invisible illness can be difficult because on the outside I look fine. On the inside I’m not fine. It’s a struggle to stand up after I’ve been sitting for a while. It’s difficult for me to stand too long. I actually had someone say to be yesterday that I should save the chairs at a children’s sporting event for those that really need them. How the hell do you know I don’t need one?

This whole post may seem negative, but for those of us dealing with the effects of fibromyalgia every day, it’s very hard to really explain how we feel. There are days I can’t even pinpoint what hurts. All of my skin hurts. Some days just my hands hurt; other days it’s my hip. My point is that every day is different. For me the one constant is exhaustion.

Please just consider that sufferers of fibro hear these things constantly. What you can do is listen. You can ask if we need help with anything. We may not accept the help, but we will never forget that offer. A little kindness and an attempt to understand, even when you don’t, makes a big difference.

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