The only thing that’s certain about fibromyalgia is that it is unpredictable. It’s a problem so individualized that 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:
Related: 5 Mistakes You’re Making When Speaking to Someone with a Chronic Illness
- 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 where 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 keeps us going throughout the day!
- You are too young to be in pain. Wait till you get to my age!
First of all, this is not a competition on 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. Our central nervous system is sensitized to experience a lot more pain in comparison to others under the same conditions.
- 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!
- 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!
- It could be worse. At least you don’t have something like cancer.
100% 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 that it is a life limiting disease. In true Justin Trudeau style, 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 suffering from fibromyalgia! Truth be told, I’ve heard all of these and unfortunately, I’ve heard them from people that are really close to me. However, I also know that they didn’t mean to hurt me – they just didn’t know any better. But hey! Now that you know, I’m hoping you’ll be careful with your words since they have the power to bruise us or heal our bruises.
If you have a chronic illness, what are some of the most ridiculous things you had people say to you? Please share in the comments below!
Love and spoons,
Good to know what not to say. Who knew a question so simple would have the power to shatter someone.
Exactly – we usually say things without giving it much thought but don’t realize how insensitive some of those things can be. Having to explain every single time can be so draining and exhausting. Saying “I wasn’t feeling well” can start to feel like an excuse if the other person doesn’t think that’s a “good enough” reason.
“Just be happy” …one of the worst phrases people still say to me.
I think it all goes back to the fact that there isn’t enough awareness out there. Most people continue fighting in silence instead of being vocal about their struggles! If more people started speaking up, there would be more awareness, therefore, more understanding and empathy.
It drives me particularly nuts when people suggest it’s “in your head” or that “your attitude is making it worse”. Something like, “I know it’s a medical condition, but have you *TRIED* getting out more/exercising more/worrying less/staying out of bed/etc? Like, I know *I* don’t feel my best when I stay in bed and my place is messy and I just obsess over whatever my problem is. Distract yourself more!”
What’s particularly baffling or galling to me about this suggestion is that I work part time, go to school part time, have no car, and live in a city, which means I lug my laptop, books, groceries, and anything else I need all over creation, taking a minimum of five flights of stairs a day and walking at least a mile and a half – on top of which I do thirty minutes of physical therapy a day, meditate for between five and twenty minutes, try to practice mindfulness and radical acceptance, avoid habit-forming or addictive pain and sleep aids, and on good days also jog or dance for as long as I safely can. My bedroom is full of sunlight, live plants, bright colors, and cat. I eat healthier than any of my friends. I rarely have the time to take naps. I have OCD so my room is both clean and tidy, and when it’s not spotless, that’s because stooping or crouching to pick up the dirty sock or dropped tissue would cause a splitting pain in my spine. I am almost always exhausted and almost always experiencing 5/10 pain or higher, 4/10 anxiety or higher. (Fellow people with disabilties understand the monumental force of will required to make this happen in those conditions. Most other people literally can’t imagine. Want to? Try to imagine hitting yourself in the knee with a hammer – not enough to break it, just a firm tap. Now imagine doing it every time your foot hits the ground while running. Make yourself keep at it for thirty minutes. Don’t cry.)
But yeah, I *CLEARLY* need to focus less on my problems and try to exercise more! Clearly my attitude and lack of willpower is the problem! I need to get out of bed even though I’m only in it 9-10 hours overnight, shake off the nonexistent dust bunnies and fling open the curtains which are already open! This suggestion is the worst to me because the person is making all kinds of crappy assumptions based on the facts that I’m 1. overweight, 2. I have a disability, and 3. I am often too miserable to be a smiley, inspirational poster child.
This does not apply to people who make tiresome but kindly-meant random suggestions – “X really helped me/my grandma/this person on the news! Did you try that?” It only applies to people who see or hear that I’m having yet another bad day and decide that since I’m grumpy and frustrated *right now*, my mindset/attitude/approach is always crap and definitely the source of my suffering.
Sorry that was kind of a rant, it just happened again yesterday and I’m still kind of bent out of shape about it because it came from a family member I’m close to, who really should have noticed how hard I’m working and how positive I usually am. 🙁
First of all, don’t be sorry for sharing how you feel =) I’m always here to listen so feel free to message me whenever you’d like! Secondly, I know how it feels for people to make random assumptions, especially when it comes from close friends and family. What works for me is reminding myself that they have NO clue what our lives are like and making peace with the fact that they’ll never know. I do my best to make them understand but if I realize that they just can’t, and their comments and misunderstandings constantly upset me, it means it’s time for me to re-think whether I want that sort of negativity in my life or not. I hope this helps <3
Thank you for your reply. I’m usually pretty good at letting things go and I know they can’t understand, it’s just when it’s most of your family, it’s hard to cut of cut the source of the negativity out of your life. I’ll manage, as I always do!
Thanks again 🙂