No one’s life is perfect. Nope, not even a freelancer’s. (You’ve heard me discuss that often enough) Most people dive into a flexible schedule for a reason. Not because they’re lazy, unmotivated, or secretly a vampire. They usually cope with health issues that don’t fit into the constructs of a standard 9-5. And while corporations SAY they’re worker-friendly, they can’t always accommodate the needs of a body that doesn’t function normally. And invisible illnesses, like fibromyalgia, often don’t get recognized by companies.
Because we look happy, healthy, and normal.
The Invisible Illness Crew
It’s easy to look at a person missing a limb and guess they require adaptations in their life. And someone with a shaved head under a scarf? Most people will assume cancer and act solicitous. You can also pick out burn victims and extend courtesy when shade’s in short supply.
But see an “ordinary” person park in a spot designated as “handicapped” or request a wheelchair? And people get snippy.
Because you have to LOOK sick to get treated as sick in this world.
There’s a giant list of conditions with no outward symptoms, though. All of the ravaging happens internally. And not one hair goes out of place as that person slowly falls apart. Hence, “invisible” illnesses:
- Multiple sclerosis
- Rheumatoid arthritis
- Lyme disease
- Crohn’s disease
And that’s only the tip of the iceberg. Mental health conditions qualify, too. So do plenty of others (seriously, I could go on and on). Any disease that leaves no physical trace is an invisible illness.
And they’re all a bitch to live with. Because people don’t SEE anything wrong. So they don’t understand that you’re struggling.
Welcome to Fibromyalgia
I got my introduction to fibromyalgia through my mother. She started experiencing the trademark signs when I was in college (denying any such symptoms myself):
- Pain that ebbed and flowed but never went away
- Trouble concentrating (the dreaded “fibro fog”)
- Difficulty sleeping
A family friend mentioned fibro and started her on a nightmare journey of testing and idiot doctors. Even in the early 2000s, medical professionals treated the condition as “fantasy.” The symptoms existed in patients’ heads. It was all “made up” to get attention, hard-hitting pain medications, or both.
My mom was put on drug cocktails that almost killed her.
(They didn’t work for the pain, either)
It took YEARS for her to find someone to take her AND her symptoms seriously.
And it took me another decade to concede I was suffering the same problems. Aches wandered around my body. Pain chomping down on my bones – even in places I’d never injured. The same struggle to get to and STAY asleep at night, waking as my body prodded me awake with new pain signals. And worst of all, the sabotaging of my memory and ability to think.
Fibromyalgia has a genetic component.
Unfortunately, there’s no way to test for the condition. (Rumors circulate on social media now and then about the lab test. It’s not validated, and no doctors I’ve spoken to recommend it)
Instead, it’s a diagnosis by EXCLUSION. Essentially, you’re a fibro patient when you fail to test positive for everything else. (Lucky you)
Life With Fibromyalgia
Treatment for fibro is a giant shrug.
Some people swear by Lyrica® (the only drug on the market specifically targeted for the condition). My neurologist had me give it a try. And within two weeks, I discontinued the trial. My body refused to tolerate it.
And, of course, as with ANY invisible illness, people recommend a giant laundry list of supplements, foods, and herbs. Also, a crock. The marketing sounds good, but it’s designed to make some blogger or social media influencer money – not help someone get through their day.
And living with fibromyalgia is rough.
I don’t have days without pain. Instead, I get “good days” – days where the pain is tolerable. My “normal” is the average person’s 5 on that interminable pain scale. On “bad days,” getting out of bed doesn’t happen. Not to write, not to read, not to eat.
My heating pad is my best friend. So are my ice packs. They help me cope when my nerves go into DEFCON-5 mode or decide to send random cactus spine signals through my skin (always a favorite).
I’m never without a jacket nearby. Even in the middle of summer when we’re seeing record temperatures. Because I’m always cold. I can’t regulate my body temperature properly. (Drives my poor husband crazy)
And I am always exhausted. I could sleep for 12 days straight (this is a theory, by the way – my body’s never slept for 8 hours in a row, much less one day), and it wouldn’t be enough. The higher the pain and the lower my recharge, the worse my brain performs.
It’s a terrible thing for a writer not to find words.
I am a Warrior
There is no cure for fibromyalgia.
Let me repeat that one: There is no cure for fibromyalgia.
Dr. Kevorkian assisted 35 patients with fibro with their suicide. (It’s a horrifying statistic that bounces around in my brain A LOT)
I exercise to keep my muscles from locking up on me (and you better believe I harp on YOU about that) and observe my diet. But that isn’t going to stop my nervous system from running rampant. It’s a reality that greets me every time I wake up.
It’d be really easy to sit back and feel sorry for myself. Or allow my idiot nerve endings to dictate how I live my life. (Okay, fine, they sort of do)
But I’m not interested in that kind of life.
So I started Invisible Inks.
Everyone knows how I feel about hermit crab essays. I decided to take that love and combine it with support for invisible illnesses. It’s my weekly chance to poke fun at this condition’s limitations on my life. And for other people with the same or similar diseases to laugh and commiserate.
(Because you better believe I’m not about to go the sappy route!)
Fly the Purple Butterfly
I spend more time than I’d like to admit going to doctor appointments. And I have an impressive collection of medical professionals in my phone’s address book. It’s part of life with fibromyalgia.
But my freelancer life allows me the space to accommodate my malfunctioning nervous system. And it gives me a voice to share my experience as one of the fibro warriors out there.
The more people that start to recognize the person behind an invisible illness, the better.
And the more compassion we show for everyone’s needs, the better our world will get.