Picture, if you will, a person who is completely healthy: they have no physical deformities, they have no speech impediments, they have multiple college degrees and can speak and write eloquently, they have no hearing difficulties (selective hearing doesn’t count), all of their original limbs are present in their original form, and they’ve never seen the inside of an Oncology office in their lives. Enviable, right? Possibly also imaginary?
Well, no, because appearances are deceiving. I just described myself from a stranger or even an acquaintance’s point of view. The truth is, though, that anyone who knows me, especially anyone in the medical field, would never use the word “healthy” in a list of adjectives – and I’ll even take my mental faculties off the table for this post. I, like a large percentage of the population, suffer from an invisible illness: an insidious monster that does its worst work under the surface where the only one who knows what’s going on is the person suffering the invasion. To the casual eye, we look like everyone else; we even look HEALTHY, which is the real scam. Meanwhile, our own bodies are turning against us in sick, twisted, and malicious ways. And the absolute worst part? We spend every day fighting and putting on a show to continue to appear normal.
I have fibromyalgia.
Some invisible illnesses out there are “lucky” (multiple sclerosis, Lyme disease): the cause is known; fibro is still bouncing around in the dark taunting researchers. Originally, patients were told they were crazy (true story: my mother is an example), that they were making their symptoms up in order to get attention, get pain medications, etc. (You’d think human medicine would find better excuses for people to have after hundreds of years, but there you go.) Finally, some doctors/researchers stepped up, acknowledged the condition was real, and they decided it was a problem in the musculature (hence its name). Then they changed their minds and decided it resided in the nerves – really great considering you have those throughout your entire body. Now, the current theory is that the bugger exists inside of your blood vessels – and we thought the previous theory was a blow! Oh, it sounds great, all of this research, there’s a problem: patients are bounced around from quack therapy to quack therapy in the meantime. My mother almost died being treated by a complete idiot of a doctor who didn’t understand the illness. They’re essentially throwing darts at a dartboard, hoping one might stick – not sound medical therapy (wait, didn’t I use that line in my talk about depression?). I want to stay angry at these medical professionals – and I can at the idiots, that’s easy – but it’s difficult. Why?
Because fibro SUCKS!
Let me try to illuminate what it’s like to be a fibro patient for you. I’m currently in the middle of a flare (which is why this post is late, actually), brought on by a combination of stress, a change in the weather, overdoing things in the middle of a flare, and possibly alignment of the stars (seriously – fibro is that weird). I have overheated electric wires extending down three of the fingers on my left hand; my right forearm is so fragile that the lightest breeze could fracture it into pieces; both of my legs have been boiled just shy of third degree burns so that even a cat whisker touching them makes me want to scream…which is at least an improvement over last night when they were repeatedly run over by rush hour traffic and then beaten for an hour with a sledgehammer. At least, that is the level of pain my brain is communicating to me because it doesn’t process pain appropriately (wherever the signals are coming from: nerve or blood vessel). I’m having trouble walking today, and just balancing my laptop of my lap is taking an effort of sheer will right now. I also fell asleep for two hours after waking up…probably because trying to sleep last night was an ordeal (remember the description of my leg pain from last night). I admit that this is a flare, so this is pretty bad, but I have some level of pain on a daily basis…and, believe it or not, it can also get worse.
Nothing helps, though.
Oh, I tried the silly fibro medication on the market – it made me sick as hell (and it didn’t work, anyway). I have tried soaks with Epson salt (which is never relaxing as it involves shooing cats away from the tub since they try to drink it), but they don’t help. Meditation is a joke (sorry for believers, but it is). This is the reality for so many people with invisible illnesses: no cure, no solution, and a lot of unsolicited advice from people who don’t share the same battle. Is it any wonder that we push ourselves to behave and appear as normal as possible? Believe me, I’d rather grit my teeth and force myself to walk across the room as smooth as possible than listen to one more person tell me eating a Keto diet will “fix me.”
The reality is that what we actually want is understanding. We would like people to understand when we’re having our flare days – and the fact that, when our bodies our under that much pain, our brains don’t always work so well (your mind can only process so much and still function properly). We would like people to understand that OF COURSE we look normal on the outside! Our battle is occurring on the INSIDE! If we actually looked the way we felt, EVERYONE would believe in the zombie apocalypse. We would like people to understand that, yes, some of us register for and need those disability placards. There are people out there that have difficulty walking more than ten steps without excruciating pain, or that need to walk slowly but refuse to take wheelchairs from people that genuinely need them (remember what I said above about appearance before you open your mouth and complain that you had to park a little further away).
I don’t want to belittle cancer because it’s horrible, and it has touched my own family (my sister is a breast cancer survivor), but people with cancer have options and therapies and hope. People with invisible illnesses…we don’t. So, before someone opens their mouth to ridicule a person who isn’t sporting a freshly-shaved head or puffy cheeks, maybe they should consider that.