Speaking With Kindness and Respect
Fibromyalgia, like many chronic health conditions, is very difficult to cope with. However, more difficult than that is the wide range of symptoms and the lack of understanding associated with it. It’s therefore not surprising that people struggle to know what to say or, more importantly, what not to say.
Here are 10 things not to say to someone with fibromyalgia.
1. You Probably Need to Get out More
Are you suggesting I’m lazy? Because that’s what it sounds like. We know we need to try gentle exercise and laying in bed all day won’t make things better, but you suggesting we need to get out more implies you think we’re not trying our best. It can sound demoralizing and a bit insulting.
Instead, say: “I’m going for a short walk if the sun’s out tomorrow. I understand if you’re not up to it but if you want to come with me, I thought it might help.” We can be a difficult group sometimes, and it must be difficult for our friends and family to know what’s best. Just be sensitive and keep us involved.
2. I Looked on the Internet; No One Really Knows What Fibromyalgia Is
We appreciate you did some research and it’s true, there are thousands of websites that don’t provide useful information and therefore it can seem confusing. However, some websites articulate this in a way that doesn’t leave people feeling clueless, and trusted health websites or medical books should be where people get their information.
Instead, say: “It must be so frustrating for you with so much information out there. I read that you are coping with a lot of symptoms as well. What can I do?” This shows us that you’re trying to understand and that means a lot.
3. Most Doctors Don't Think Fibromyalgia Is a Real Illness
Actually, that’s not true. Some doctors have doubts about it and those doctors are incorrect and not up to date with modern research. Most doctors know how things have developed in the area of chronic pain, and some specialize in the area and are completely up to date with recent findings.
Instead, say: “Do you have a good doctor?” This makes us feel like you care, and gives us the opportunity to talk about how fibromyalgia is managed by the medical profession if it’s something we want to address. The main thing is that this question puts the emphasis on the GP, not on you.
4. Are You Sure It's Not Just in Your Head?
This is the question we have been fighting since day one. We know stress makes it worse, and we know one of the many symptoms can include depression or anxiety, so we understand the close links between fibromyalgia and mental health. However, that does not mean under any circumstances we are inventing our pain. It’s possible we experience pain in a different way to non-fibro patients, but again, that doesn’t mean we’re inventing it.
Instead, say: Nothing. Even if you believe for some reason that your fibromyalgia friend is imagining a problem that isn’t there, say nothing and just support them. The doctor, the consultant, the pain specialist and the many other medical professionals will help to determine the person’s relationship with pain. Your job is to support your friend.