Via- The Mighty
Fibromyalgia is a chronic and incurable condition characterized by widespread musculoskeletal pain, chronic fatigue, brain fog and sleep disturbances that is estimated to affect between three and six percent of the global population. However, since fibromyalgia was formally recognized only a few decades ago, many people (including doctors) are still unfamiliar with the illness and the reality of how it can affect someone’s life.
These uncertainties can unfortunately give way to assumptions that are not just inaccurate, but hurtful. Many still believe that fibro is not a “real” illness, and that those who have it must simply be “faking” or “attention-seeking” – when that could not be further from the truth. Between the physical symptoms and emotional impact of having a lifelong condition, fibromyalgia can already be a difficult illness to manage. But add on the stigmas and misconceptions surrounding the condition, and navigating life with fibro can become even tougher.
We wanted to correct some of the misconceptions surrounding fibromyalgia, so we asked our Mighty community to share the “myths” they’ve heard that make it even harder to live with the condition. Breaking down these stigmas is not only an important part of promoting general understanding and awareness, but could eventually lead to more research and better treatment options for those with the illness.
Myth #1: Fibromyalgia affects everyone the same way.
“Just because they know someone who also has it doesn’t mean that our symptoms and issues are the same.” – Kyndra E.
Reality: Just as every person is unique, so is their experience with fibromyalgia. Different people may have different symptoms, different comorbidities and may respond differently to the challenges of their illness.
Myth #2: Fibromyalgia only affects older women.
“‘Only older people have it.’ Wrong! Young women and men have fibromyalgia and can be diagnosed even in early teen years.” – Kristin S.
“Some people seem to think I’m ‘too young’ to be this sick so it can’t be that bad. So if I just stop being lazy and exercise, eat right and, oh yeah, tell fibro I’m too young to be this ill, everything will be hunky dory.” – Bin T.
RESOURCES FROM NATIONAL FIBROMYALGIA ASSOCIATION
Get involved with fibromyalgia
Living with fibromyalgia: what’s next?
Reality: Although fibromyalgia is more common in women and most often gets diagnosed in people between the ages of 35-45, fibromyalgia can affect both men and women of any age.
Myth #3: If you’re able to go out and do something, you must be feeling better.
“Because I managed a trip to the store I ‘must be doing better.’ My family has to eat and I have a home to maintain; of course I have to do some shopping. Just because you see me at Kroger doesn’t mean I’m magically ‘healed’ of my fibro.” – Jessi E.
“Just because I do function means it ‘can’t be that bad’/’I can’t be in that much pain’/’I can’t be that utterly exhausted.’” – Liselle F.
Reality: Despite the often-debilitating symptoms, people with fibromyalgia still have lives and responsibilities. Just because you see them out running errands or getting coffee with a friend doesn’t mean they’re not still dealing with the symptoms and side effects of their illness.
Myth #4: The pain and symptoms are “all in your mind.”
“Definitely that I’m making it up/that it’s all ‘in my head.’ Also when I was in agony before diagnosis but a doctor dismissed the pain as down to my depression despite me being adamant it was different.” – Dani S.
Reality: People with fibromyalgia are not “making up” or “imagining” their symptoms. Fibromyalgia pain is real and valid.
Myth #5: If you take medication, your pain and symptoms will be cured.
“Taking Tylenol or Advil won’t make the pain go away. I wish people knew that literally nothing gets rid of [my] pain completely. It’s more about settling for a reduction in pain.” – Jackie S.
“A lot of people think that because there’s medication for fibromyalgia that I can just take those meds and be cured like some miracle. In reality those medications don’t work for a lot of people and if they do work they usually come with a handful of side effects. There is no magic pill and it usually takes a lot of trial and error to find the right combination of treatments for someone with fibromyalgia to feel relief.” – Victoria D.P.
“Just because I’m on medication for this illness, doesn’t mean I am pain- and symptom-free, and that I don’t still have significant flares.” – Gina F.
Reality: While medication can help reduce pain or symptoms, it is not a cure-all and generally does not provide 100 percent relief.
Myth #6: Fibromyalgia isn’t a “real” diagnosis.
“It’s an actual chronic illness. I’ve heard, ‘oh, isn’t that the diagnosis when doctors don’t know what’s wrong?’ Or ‘oh, that’s not a real illness.’ People should educate themselves before commenting on something they know nothing about.” – Angela B.F.
“It’s not a ‘real diagnosis’… It’s been so hard for me to accept my life with fibromyalgia because I feel like I’m still waiting for a real answer… But I already have it, and it is fibromyalgia.” – Terri D.M.
Reality: Fibromyalgia is a legitimate illness with its own unique set of symptoms.
Myth #7: You look fine, so you must be feeling better.
“There are no visible symptoms [for me], so people assume I feel fine. When in actuality, I’m drop-dead tired, my joints are on fire and my entire body feels badly bruised. We pretty much spend every day feeling like we were just in a car accident.” – Traci T.
“Even though I’m putting on a smile and look like I’m enjoying my time, I’m really in a lot of pain and just don’t want to ‘ruin’ a good time/night out. Just because you can’t see it or I don’t talk about it, doesn’t mean I’m fine. Or if I was able to do something yesterday it doesn’t mean I can do it today. My rest and recovery is a lot longer than healthy people’s.” – Allison M.
“I hate it when you put in the effort to keep smiling and look like you’re enjoying yourself, [then] somehow it will come up that you’re [not] fine, then all hell breaks loose. I don’t go out much anymore.” – Luke W.
“I’m not calling out, in the hospital, wincing in pain so it must not be that bad… The problem is when I display my pain people call it fake or attention-seeking. There is no in between for them.” – Bay H.
Reality: Illness isn’t always “visible.” A person’s appearance doesn’t necessarily reflect their health or how they feel.
Myth #8: If you just tried [natural remedy/alternative therapy/miracle cure], your fibromyalgia would go away!
“While we appreciate the referral to every herb, exercise and practice that comes along, please… just keep it to yourselves. We have heard everything. There is not a cure. There is not a magic solution. If there was some amazing cure, believe us, we would have all shared this information with each other.” – Catherine T.
“I’m so tired of being told if I ‘do this diet’ or ‘try this workout regime’ or, my favorite, ‘maybe if you lost weight, your body wouldn’t hurt as bad.’” – Mallory S.
“If I take this vitamin, drink this drink, use this supplement then all will be solved. If only it were that easy.” – Jody W.
Reality: Although many people may tout certain natural remedies or alternative therapies as “miracle cures,” there is no magic cure for fibromyalgia. Managing symptoms often involves a range of different treatments and a lot of trial and error.
Myth #9: People with fibromyalgia are “lazy.”
“That I’m ‘lazy.’ I can’t even tell people about it or the many symptoms and conditions that can come with it without ridicule or jokes. I work and I am very tired even after a few hours, so it’s hard to stay late and people think I’m just lazy.” – Eloise T.
“The most frequent one I’ve heard is the statement, ‘You’re faking it. You’re just lazy. Go exercise more!’ The reality is that most of us have a remarkable work ethic, most of us exercise and none of us fake our pain. Every time I hear that, I want to tell the person that faking pain is a luxury I don’t have. For every ‘I wish I could stay home,’ there is one of us saying, ‘I wish I could fake it.’” – Mikki I.
Reality: The pain, fatigue, brain fog, sleep disturbances and other symptoms common among those with fibro can be debilitating and affect a person’s ability to perform even basic, everyday tasks such as showering or preparing dinner. Being limited by this illness does not equate to being “lazy.”
Myth #10: Chronic fatigue can be alleviated with a good night’s sleep.
“If I get a ‘good night’s sleep’ I won’t feel as tired tomorrow. I’m not tired. I have extreme fatigue. A symptom of my chronic illness. I’m way past tired.” – Amanda J.W.
“That I will ever get enough sleep to be rested. People constantly ask me if I’m ‘getting better or sleeping better.’ Naps sustain me, not heal me because I am exposed to more sleep.” – Sara W.
Reality: Chronic fatigue is just that: chronic. Although not getting enough sleep can certainly exacerbate it, taking a nap or sleeping in one day won’t make the fatigue go away.
Myth #11: You can cure fibromyalgia with lifestyle changes.
“Stop telling me, ‘well, I heard the more you move the better.’ This isn’t true, especially when you have other issues that cause your pain.” – Sarah C.
“When you’re asked, ‘why are you forever sick?’ with a follow-up of ‘if you eat right, drink more water, exercise and go out more then you’ll not think too much of you being sick.’ Yet they don’t really listen nor want to give time nor effort to know exactly what fibromyalgia is.” – Vee Vee Y.
Reality: While some people may find that altering their diet or exercise regimen helps them cope with certain symptoms, fibromyalgia cannot be cured or “fixed” with lifestyle changes.
Myth #12: The diagnosis is an “excuse” to take drugs or medications.
“‘You don’t need all that medication. No one is in that much pain all the time. You are the reason we have a drug problem.’” – Daniel P.
“I’ve had people assume I am diagnosed with fibromyalgia because I want to be prescribed marijuana. People assume all people with fibromyalgia smoke marijuana. Umm, no, I don’t want fibromyalgia or marijuana. I just want to be able to get up and take a shower without my legs giving out on me.” – April C.D.
Reality: The pain and symptoms experienced by those with fibro are legitimate and deserving of medical treatment. If a fibro patient and their doctor have decided that a particular medication or drug is the best way for them to manage their symptoms, that decision should be respected, not judged.
Myth #13: People with fibromyalgia are never able to do anything.
“That I can’t do anything! Please still invite us fibro peeps to do things. Leave it up to us if we can do or can’t do something. Not inviting us on things like hikes because you didn’t think we could ‘handle it’ hurts emotionally.” – Alison W.
Reality: Those with fibromyalgia may not always feel up to going out or partaking in plans and activities, but it doesn’t mean they should automatically be excluded. Sometimes they may say “no,” but other times they may say “yes.” It never hurts to ask and let them decide whether or not they’re up for something.
Myth #14: People with fibromyalgia only have “bad” days.
“I think for me it’s that it’s always super terrible. Of course during flares I feel like I’ve been run over by a bus, but on good days it’s a lot easier to take the idea that ‘it’s not real’ or whatever because I feel like a fraud. I know that I’m not but because there’s such a stigma around it it can be hard to not feel like I’m being over dramatic.” – Kayla S.
Reality: Just like anyone, healthy or not, people with fibromyalgia may have “good” days and “bad” days. Even though fibromyalgia is a chronic condition (and therefore always present) doesn’t mean that some days aren’t better than others.