Posted in Blog posts, Fibromyalgia

Is #Fibromyalgia Still a Four Letter Word?

5 years ago I wrote, “Fibromyalgia is a Four Letter Word” https://yadadarcyyada.com/2013/08/08/fibromyalgia-is-a-four-letter-word/, and now, 5 years later, I’ve updated it and I think, sadly, it’s still true, tell me what you think.

Guest blog by D. Parker, blogger at https://yadadarcyyada.com/ also a Fibromyalgia London Group member and Peer Leader.

This isn’t meant to be whiny (see how that goes…), or a ‘it can be fixed’, or whatever blog post. Just a few thoughts about why people think Fibromyalgia isn’t a real syndrome, that it’s just lazy, unmotivated people and mostly, why I don’t have answers.

Let’s begin at the end…I don’t have all the answers, maybe because I don’t sleep enough. Also, I’m not a million years old. In addition, I’m certainly not a super genius.

Oh, did I mention I don’t sleep enough?

People prefer to think people with disorders/syndromes such as Fibromyalgia are lazy, I dunno, maybe because they don’t want to accept that they could wake up one morning and have something like: Fibromyalgia/Fibromialgia, Chronic Fatigue Syndrome, CRPS, ME, Lyme Disease and/or another chronic illness.

Instead of doing the whole “there-but-for-the-grace-of-God-go-I” thing, too many people just decide that people with these illnesses/syndromes could do better if they only: weren’t so lazy, would exercise more, ate differently, got a better attitude, tried harder, did more, pushed themselves, pushed through, pushed harder…

It’s easier to believe that, I suppose, than believe someone who was full of energy, productive, happy, motivated, etc. can too quickly become a person: full of pain, fatigued (relentless insomnia and pain can tire you out a wee bit),

frustrated, sad (so many sadz),

depressed, anxious,

plagued with memory issues,

exhaustion, confusion…

have massive struggles to function, and so on.

Fibro becomes a joke, a stain, a dirty word because otherwise people would have to accept the reality that people get sick. Humans get sick. They get short-term illnesses, they get injuries that sometimes heal and sometimes, don’t, they get chronic illnesses, they get terminal illnesses, and some live with agony and sometimes, they die.

People often tell someone with cancer they should fight The Cancer, as though that will fix everything. Yes, poking a toothpick at a dragon works so well. Ever thought of how that makes people feel, when they’ve lost a loved one to cancer? Oh, so my loved one just didn’t fight hard enough, well, thanks, that makes me feel so much better.

The same goes for those who’ve lost a loved one to suicide. I’m sure they feel horrible enough without others implying their loved ones gave up, chose to leave, didn’t love them enough to stay, weren’t strong enough, or just didn’t fight hard enough. 

I don’t live in someone’s head so I can’t say if they tried, if they fought, or if they chose, but neither does anyone else, so no one is qualified to make these judgmental statements. No one. Live your own life and let other people live theirs.

Instead of mocking someone with an illness, try having empathy for them. Not sympathy or pity. Compassion. Kindness. I’m sure there are some bizarro individuals would prefer to be ill than well (but they have a whole other illness), but come on, does anyone, anyone at all truly, deep in their heart of hearts seriously believe that’s a majority?  Most people would choose to be well.

Most people would choose to have a full life, a life with a normal amount of pain and fatigue and other symptoms. Just like most people would choose to beat cancer. Hell, most people would choose not to get cancer at all. Most people would choose not to have a mental illness. If there was a choice involved.

People are slowly coming around to the belief that people who lead a homosexual lifestyle didn’t choose to be that way, it’s the way they are. Why is everyone is fixated on who loves whom…what the world needs now is more love, more fun, more kindness, more compassion, more empathy, more joy. https://yadadarcyyada.com/2015/07/03/how-to-be-good-to-one-another/ It has taken a long time and there are still haters (haters gonna hate) out there, but I bet many people are happy to see a light at the end of that rainbow.

I wonder when that day will come for people with chronic illnesses like Fibromyalgia, or people with mental health issues, or people with Autism, etc.  I wonder if or when people will see them, really see them, for who they really are:  your Mom, your child, your sister, your friend, your co-worker, your Dad, your teacher, your brother, your minister, your neighbour – just people.

Don’t judge people.

Have a little empathy.

Those people might be: interesting, fun, brilliant, a hope for the future, a good friend, or something more than a friend, someone to talk with, walk with, someone who inspires you, or but most of all, who gets you, but you’ll never know if you make judgements, make assumptions.

Don’t miss out!

Copyright D. Parker (aka Donna Parker/yadadarcyyada) 2013-2019. All opinions expressed are that of the author and do not necessarily reflect those of Fibromyalgia London Group (FLG).


All members of Fibromyalgia London Group, please send me blog posts, book reviews (relevant to subject matter at hand), recipes, quotes, memes, gifs, lyrics, real life experiences, etc. so we can publish them in our blog. Be part of helping us help others. You can request first name only, full name, pseudonym, etc. for publishing. Send info and deets to: iwanttobelieve@rogers.com

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