Fibromyalgia is a complex condition characterized by chronic widespread pain and fatigue. As it’s a hidden disability, friends/family/colleagues often know little or nothing about it — it’s entirely up to the individual how much they let show. This can lead to some serious misunderstanding and labeling of people with fibromyalgia as lazy, unreliable, or miserable. As a 27-year-old who has lived with fibromyalgia for five years now, here are three things I would like you to know to debunk those myths:
1) If I have to cancel plans, I don’t take that lightly.
Every minute of every day, my body is giving me a reason to go home and curl up in bed. That means that every time I’m not doing that, I’m fighting it. When you see me at a café with a friend, at work, or in the supermarket, I could be battling against heaviness in my body, irritation caused by my clothes, backache from the chair I’m using, or fatigue tempting my eyes to close. My condition has caused me to persist with daily life through the type of pain and exhaustion that would ordinarily warrant a sick day. With this in mind, please know that when I do have to cancel plans with you or take a day off work, I really mean it. It might be that my pain is particularly bad that day and I don’t feel physically able to get out. Perhaps I know I have a busy week at work coming up and I want to preserve my strength and energy for that. Maybe I’ve just been pushing through for a while now and I need a moment to stop and give the pain and fatigue the rest it craves. Whatever the reason, you need to know that I value our plans, and canceling is a painstaking decision for me.
2) I still want to hear from you.
I can vividly remember sitting in a café with a friend while she poured her heart out about the difficult circumstances she had been in for the previous few weeks. Responding to her visible emotion, I asked her, “Why didn’t you tell me about this while it was happening? I could’ve helped!” Her response caused my heart to sink – “I know you’ve been in pain and I didn’t want to bother you.” Friends, family, colleagues, and even strangers — the last thing I want you to believe is that I don’t have the capacity for you. My physical abilities might be limited sometimes, and I may feel overwhelmed, but I always value knowing what’s going on with you. I want to hear when you don’t feel well or you’re in pain without you comparing it to mine or worrying that it’s trivial. Even if I can’t physically see you, I can always text or call, and nothing makes me happier than hearing from you.
3) Don’t wrap me in cotton wool.
Honestly, living in constant pain is the most confusing thing for your emotions! There are days where I go from feeling like a powerful pain-themed superhero who is going to take on the world and tackle ableism to being a hollow weepy mess in the space of about half an hour. The important thing to know is that I’ve become very experienced at managing my pain and my emotions. It’s not helpful to automatically exclude me from something that you don’t think I’ll physically manage, or to avoid conversations about my pain in case they upset me. Give me the choice — extend the invitation anyway and ask me how I’m feeling. If I want to laugh about my illness (like the time I had to leave the house with my hair half-straightened because my arms ran out of steam halfway through), please laugh with me! This is part of who I am, and I don’t want it to be feared.