This Fibromyalgia Awareness Month and Fibro Awareness Day (May 12), it’s our time to show the world what it’s really like to be a fibro warrior. So we asked our Mighty fibro community to share what they want people to know about the condition, especially during this time of awareness. Need proof that people with fibromyalgia are true warriors? Read on.
Here’s what our community shared with us:
1. People of any age, race or gender can have fibromyalgia.
“You don’t have to be old to be affected by fibromyalgia. I may be young but my body is old. I can’t always do everything you’d think a young girl could. Sometimes I need a [disabled] spot or somewhere to sit.” — Elizabeth B.
“It can affect people of any age, gender, race, etc. You can be a reasonably healthy 24-year-old and suddenly have a myriad of disabling symptoms that don’t go away.” — Monica J.
“Fibromyalgia may not affect men as often as it does women but that doesn’t mean it’s any less severe.” — Johnathan J.
2. The pain and symptoms are real.
“Pain is real. It’s hard to believe something you can’t see, but it’s there. Many people spend their lives being questioned by doctors and sometimes not believed by them. If it’s someone you know or love with the illness, believe them and support them any way you can. It’s the best thing you can do for them.” — Amanda G.
“We are not being dramatic. Our pain and discomfort is really as bad as we say it is. In fact, it is probably more so, as we often downplay just how bad it is, for fear of others thinking we are just seeking attention. The pain and discomfort is indescribable, and is probably unlike anything you’ve ever felt, if you do not have fibromyalgia or other chronic disorders.” — Terri A.
3. It can take a while to get diagnosed.
“It can take five to seven years for a diagnosis and four to six different providers! Fibromyalgia didn’t even have its own diagnosis code until October 2015!” — Jess M.
4. Symptoms can change from day to day and minute to minute.
“I can be fine one minute, and the very next be in so much pain that I almost pass out.” — Carolyn M.
“No two days are the same so planning in advance is just not possible because I don’t know how I will feel from one day to the next.” — Emma T.
5. You can’t tell just by looking at a fibro warrior how much pain they are in.
“Many of us suffer in complete silence. We buck up, put on a good face, and fake it — pushing through pain, soul-crushing fatigue, dizzying nausea and ever-shifting physical limitations that create a brain fog that makes you feel like you’re trying to think through thick quicksand. Some of us never complain, and we bear the burden alone.” — Mikhaile S.
“When I look ‘well’ it’s because I’ve struggled with my husband’s help to shower, dress and do my hair. Without help, it wouldn’t happen!” — Jill C.
6. They can’t just “decide to push through” when they’re in a flare.
“I just wish when I say I need to rest people stop telling me to push through. There is no pushing when you’re out of energy and in pain. You can’t just walk the pain off.” — Olivia P.
“Our bodies often make the choices for us. We don’t always get to do what we would choose to do. Because if it was up to us, we’d be out there, doing as much as possible just because we could. But as it is, our bodies limit what we can do and it’s often out of our hands.” — Jennifer J.
“It’s not a matter of ‘mind over matter’ when it comes to our pain. It’s very real, it’s all over and all encompassing, and it’s not just in our head.” — Lisa T.
7. Fibromyalgia is often accompanied by mental health challenges, too.
“Waking up and going to bed with pain all day every day and all the other symptoms it comes with actually affects your mind after a while because it’s a constant battle we’re fighting from sun up to sun down and every moment in between. It doesn’t stop then return, it’s with you always.” — Toni D.
“It’s not just ‘widespread pain’ that we deal with. The struggle to do basic tasks that healthy people take for granted really wears on our mental and emotional state. Because we look and sound like we’re OK when we do manage to get out in public, people assume we’re ‘better’ and don’t truly understand this is a chronic issue.” — Moomi H.
8. Fibromyalgia causes many different types of pain.
“I would like people to be aware that there are many different types of pain, that can all happen at once (burning, stabbing, aching, nerve, etc.) and these can occur in any part of my body (yes, my boob can feel like it’s being stabbed!).” — Kelly W.
9. And it can also cause sleep issues and fatigue that’s more than being “just tired.”
“Painsomnia is very real. So when people like me sleep during the day, we’re not lazy. It’s because we couldn’t sleep at night. My pain gets worse at night, and I’ve read others do as well. Life with fibromyalgia is hard, but we try as best as we can. Please don’t judge us.” — Meena N.
“The fatigue is more than just tiredness… it feels like you’re walking through treacle with cement blocks strapped to your limbs. The way fatigue can affect you mentally is important to be aware of. Other than the brain fog, fatigue can make you feel spaced out and dizzy. It can also come on in an instant. We can be in the middle of doing something and within a split second we can go from managing to having to go and lie down.” — Kelly W.
10. It’s difficult to know what is triggering the pain and how to treat it.
“We don’t always know what triggers it. We can’t try this or that as easily as you think. No we’re not being lazy. We do try our best. Please be patient with us. We annoy ourselves, too…” — Crystal M.
11. Fibro warriors have to plan their activities so they can save and budget their limited energy.
“It is always there, in some form or another it is always there. If I say to you ‘I didn’t get any sleep’ it means I need to save my energy. There are no extra movements, no extra anything to give because it will set me back even further and I try to do all I can not to be set back.” — Reikii R.
12. People with fibromyalgia still have the same hopes and dreams as anyone else.
“Just because I have fibro doesn’t mean I’m not the same as everyone else. I want to work, have fun and be happy like everyone else. Just because I have this illness doesn’t mean I am incapable, though every time I apply for work and have to tell them I have this I don’t get it, even though I have worked with it before and now I’m on meds that actually work for me. It’s so frustrating.” — June P.
13. But fibro can make all aspects of life more difficult.
“It hurts to stand, it hurts to sit. It hurts to walk, it hurts to rest. It hurts to work, it hurts to stay home. It hurts to sleep, it hurts to not sleep. We sleep but we are never ever rested. It hurts to breathe. It hurts to exist. You cannot possibly understand it unless you’ve lived it. It’s a daily struggle to just exist… And pretend we’re OK. Fibro sucks the life out of you and I wouldn’t wish it on my worst enemy.” — Donna Marie S.
“It is debilitating and prevents us from doing things like a ‘normal’ person. People with fibro are legitimately limited in the capacity for work, exercise, physical activities and socializing.” — Claire M.
14. Fibromyalgia often requires figuring out a “new way” to do things.
“Just because I cannot do things the way I used to, doesn’t mean I can’t do them. [For example] I cannot knead bread by hand so I use a mixer while sitting down. It’s all about doing what humans do best, adapting. Never give up on what you love, just adjust how you do it.” — Sarah M.
15. People with fibromyalgia are true warriors for dealing with this condition every day.
“Just because I’m smiling doesn’t mean I’m getting better or that my fibro isn’t real. I smile because it’s one thing I can control. It’s a choice. I’m not saying I don’t have bad days. I don’t always smile at home. And to be fair, I hide many of my symptoms because I’ve been judged immediately and usually seen as a ‘crazy hypochondriac.’ Either way… I smile. My chronic illnesses absolutely will not steal the joy in my life.” — Julie C.
“My illness does not define me even when it has knocked me down yet again… my strength and courage to get back up and to keep going does.” — Georgie M.