5. It Could Be Worse, It Could Be [Insert Other Illness Here]
This is a tough one, because the people saying this are trying to be helpful. The problem is, it isn’t helpful. You’re right, we could have something that you consider to be worse but for many of us, this is our personal hell. There are many other people with many other health problems, but let’s not rank them from good to bad. They’re all bad.
Instead, say: “This must be so difficult to deal with. I can’t believe how well you cope.” A little compliment about our coping strategies will go a long way.
6. We All Get Sore and Tired
Yes, we do. But ‘sore and tired’ isn’t fibromyalgia. This is different. You might be trying to sympathize with us, and we know that you probably need a rest from your aches and pains because, let’s be honest, we all have them. But this is different.
Instead, say: “My back is so sore today. How do you cope with your back pain?” You can be pretty confident that if it exists as pain relief, we’ve probably tried it and we’ll be happy to recommend what works for us.
7. You Just Need to Rest
Rest helps, there’s no denying it. But remove the word ‘just,’ because resting alone won’t cure fibromyalgia.
Instead, say: “Do you need some rest?” We know when we’ve overdone it, and we know when we’ve had more than enough rest. Pain management is a skill and most fibromyalgia patients are pretty good at it, so leave the ball in our court.
8. What's That Thing You Said You Have?
It’s not a hard word. Fibro-my-algia. Suggesting it’s something we said we have implies it has no medical backing. We didn’t make up the condition. It exists, and this question can make us feel like you’re not taking us seriously.
Instead, say: “How do spell your condition? I wanted to look into ways to help but I wasn’t sure how to spell it.” This is all kinds of lovely, and very thoughtful of you. Plus, it doesn’t imply you doubt us.
9. I've Seen You [Insert Activity Here] so I Assumed You Were Fine Now
I walked up stairs, I went to work, I went to a party, I went on holiday — I lived. That doesn’t mean I wasn’t living with chronic pain. Some days will be okay, other days will be terrible, but surviving the day doesn’t mean we’ve been cured.
Instead, say: “How are you doing at the moment? You seem to be having a good day but sometimes it’s hard to tell.” Fact. Sometimes it’s hard to tell. Most of us have gotten pretty good at masking our pain, so it’s okay for you to ask us how we’re doing. In fact, we appreciate it more than you know.
10. You Don't Look Sick
What does sick look like? Do you mean that I’m not in a wheelchair therefore I can’t have a physical disability? Do you mean that I do my hair and wear makeup so I can’t be unwell? What do you mean? This is the single most frustrating thing you can say to someone with fibromyalgia.
Instead, say: “It’s awful isn’t it, my friend has [insert invisible illness] and it’s so frustrating that people assume you can see all health problems.” I am 99 percent sure we are not the only person you know with an invisible illness. In fact, most health conditions are invisible, so we need to stop thinking that if you can’t see then it isn’t there.