The only thing that’s certain about fibromyalgia is that it is unpredictable. It’s a problem so individualized, you’re the only person who really understands what you’re going through. Part of coping with it requires you to develop a thick skin and expect people not to understand, expect them to think you’re making excuses and expect them to say some really insensitive things.
Here’s a list of some of the most ridiculous things you’ll hear people say to fibromyalgia warriors:
1. “How can you possibly sleep all the time? Stop being lazy.”
Disrupted sleep, insomnia and lack of restorative sleep are some of the major symptoms of fibromyalgia. In addition, pain also makes the sleep difficult, and sleep deprivation exacerbates the pain even further — it’s a never-ending spiral! The fatigue caused by these sleep disturbances is so debilitating — imagine feeling the need to nap just after having breakfast or taking a shower, getting breathless from going up the stairs or just having a regular conversation, or having moments when even moving a limb feels like a lot of work! These are all very regular instances in the day of someone with a chronic condition. So please keep in mind that we don’t sleep all the time by choice, but because of our needs. We would much rather be watching that episode of “Jane the Virgin,” or checking out the new art installation downtown. But naps are what keep us going throughout the day!
2. “You’re too young to be in pain. Wait till you get to my age!”
First of all, this is not a competition to see who’s in more pain, so why play the comparison game? Secondly, pain doesn’t have an age so your age doesn’t validate your pain any more than mine. And lastly, fibromyalgia is a pain amplification condition. We’re sensitized to experience a lot more pain in comparison to others under the same conditions.
3. “You disappeared! Why would you do that?”
When pain, depression, anxiety, insomnia, migraines and extreme fatigue hits you all at the same time, it takes everything in us to do daily activities. At that point in time, we are fighting our own bodies. It’s a struggle on so many levels — physical, emotional and mental — that it’s bound to take a toll on us. So we are sorry if we stop messaging or calling. It’s not because we don’t care — trust me, we do! It’s because we expect those closest to us to understand and not hold that against us. In fact, if you ever really need us, we’d get back to you in a heart beat! We just can’t gather the energy to play “catch up.” So next time you doubt your friends or family, ask yourself this question — can you think of anyone who’d rather be stuck in their bed or at home instead of being out and spending time with their friends and family? We thought so!
4. “Must be nice to __________.”
Stay at home and relax all day, get accommodated at school or your workplace, get a disabled parking permit or get long-term disability insurance — fill in the blank to your own discretion. This, in my opinion, is actually the most insensitive you can be; while saying any of that you are disregarding our struggles, the adjustments we make and the extent to which our work, social life, relationships and quality of life are affected on a daily basis. Can any of these “luxuries” really make up for the pain we are in 24/7/365? Not even close! They are just society’s way of attempting to give us a fair chance at life. Because nothing, absolutely nothing, can make up for our struggles and we would do anything to get our old lives back!
5. “It could be worse. At least you don’t have something like cancer.”
Totally agreed! However, that doesn’t take away from the pain we feel, as well as the sacrifices and adjustments we make every day of our lives. After all, it doesn’t matter whether you’re drowning in the sea or the bathtub — either way you’re still drowning! So yeah, we understand it’s not a life-threatening disease, but you need to understand it is a life-limiting disease. Pain is pain is pain; we all experience it differently, but every experience is just as valid.
There you have it — the five most ridiculous things anyone can ever say to someone who’s struggling with fibromyalgia! Truth be told, I’ve heard all of these and unfortunately, I’ve heard them from people who are really close to me. However, I also know they didn’t mean to hurt me — they just didn’t know any better. But hey! Now that you know. I’m hoping next time you speak to someone with fibromyalgia, you’ll be careful with your words — they have the power to either bruise us or heal our bruises.
Follow this journey on Fabulous and Fatigued.