The Side Unseen - Chronic Pain in Badass People
As we have established by this point, I do about 1,000 things. Too many things, but I have no intention of giving any of them up. I live for all the things! I cannot remember the last week that I worked less than a 70 hour workweek, with weeks usually clocking in closer to 90 or 100 hours.
I still try and make time for the people that are important to me. I try to communicate in a fairly timely manner. I try and get my articles in to my editor on time. I give lectures. I teach classes. I see clients from dawn 'til dusk through the week, and on weekends. I'm constantly pioneering new facets of, and outlets for my work, and going above and beyond to meet as many people's needs as possible. As mentioned in the last post, "Overwhelm and the Guilt Trip," I am trying harder to even take some time for myself.
If you asked most folks about me, I'm confident you'd get a description similar to the above paragraph. I often hear words like "driven," "accomplished," "overachiever," "passionate" and "multi-talented" used, which causes much blushing, and shuffling of my feet, and countering with "no, YOU'RE amazing!" But there's something else. Something looming.
Behind an almost-constant smile, positive attitude, and obsessively-pushing-forward spirit there is something unseen. A few somethings. Chronic pain somethings.
I have had a condition known as Ehlers-Danlos Syndrome (EDS) since birth. For most of my life it's been little more than extreme hyper-flexibility, which has been pretty awesome, honestly. It's made it easy to excel at dance, gymnastics, yoga, athletics, and other fun things (nudge nudge, wink wink). As I've gotten older, however, it's become less sexy-bendiness, and more "oh, my shoulder fell out of socket again," or "hey babe, can you help me relocate my hip real quick?" It has also resulted in a very expensive K-Tape habit. That stuff is a frickin' lifesaver! I look like a freak-robot from the future with all my joints taped into place, but fortunately that fits into my odd aesthetic pretty well.
Additionally, at the ripe old age of 19, I was diagnosed with a condition called Fibromyalgia Syndrome (FMS). This one is a little more commonly known than EDS, but not necessarily better understood. To keep it exceptionally simple, it's pain. All the time pain. 24 hours a day, 7 days a week pain. According to a fancy scientific scale a doctor gave me once upon a time, FMS pain is, on average, somewhere between the pain of cracking a molar, and the pain of childbirth. All. The. Time. Some days are better than others, but there's no point in time that there is no pain. (There are lots of other symptoms of fFMS, like cognitive difficulties, digestive problems, insomnia, depression - as well as many varieties of pain experienced, from costochondritis to paresthesia, to a deep, indescribable aching. There will be future posts dedicated to going more in-depth on these, I'm sure.)
Now, here's a cool thing. Despite experiencing above-average pain constantly, I (and many other's that I know who are in similar situations) still do cool shit. Like hike, camp, kayak, trail run, and travel. I am often questioned about whether or not I am actually in pain because of my participation in such activities. Here's the answer. HELL YES! But son, I've been in pain for just shy of a decade. Unless a miracle or some medical breakthrough happens, I'm going to be in pain every day for the rest of my life. Why would I give up my comfort AND doing the things that make me happy? Sure, it's extra hard. Sure, if I do a run or a hike, I'm in extra pain the next day. But what's the alternative? Spend my whole life laying on my heating pad watching Netflix? Kill me now! Just because I have a disability, doesn't mean I don't deserve to do things that make me happy. And just because I choose to do things that make me happy, shouldn't mean I have to justify myself to the world.
This is not a "woe is me" post. I'm not complaining, I'm trying to be incredibly (anxiety-inducingly) transparent, because invisible disabilities need people to speak up and be proactive in education. So here it is - I go back and forth between preparing for my first 5k, and having to use a cane. I work days at a time with no problems, then have days when I have to cancel every plan I've ever made. Some days I wear super cute stilettos, and others I can only wear my old, tattered, well-worn-in flats. I have days when the world is my oyster, and days that cognitive difficulties are so bad I have to cancel all my consults. But the point is - I KNOW THAT I DON'T LOOK SICK. I know that I don't act like what people expect sick people to act like. I hear it all the time, for myself, and from my clients with chronic pain conditions and other invisible disabilities - people take a glance, "You don't look sick!" "You're med-seeking!" "You're just lazy." (the middle one is hilarious to me, as I'm super crunchy and am actually not on a single medication, and haven't been for over half a decade. That, also, is another story for another time.)
Listen honey, I'm aware that I'm not confined to a wheelchair full time (yet). I'm aware that I'm tall, moderately attractive, and don't look disease-riddled. I'm aware that when you think of someone being in excruciating pain, you don't imagine a person who's working ridiculously long hours, or someone who can climb mountains, or someone who's really happy and smiling most of the time. But please, don't judge. I know I don't look sick, but that's because you can't see the deformations in my neurons. It's because you don't see me have to relocate my shoulders and knees when I get out of bed in the morning. I don't look sick because you cannot see the inflammation in the cartilage surrounding my sternum, causing pain that has been described by experts as "equivalent to a heart attack." You cannot, without some fancy imaging equipment, see trauma to someone's brain. Or chemical imbalances. Or neuromuscular syndromes.
So please, this whole post to say, before you judge someone for not "looking sick" or fitting into the construct of what you think someone with a disability should look or act like, remember this. Remember what you cannot see. Remember that you don't know someone's story. Remember that others shouldn't ever be limited by your opinions.
Note: This is a very hard post for me to write and share publically, even to a very small audience. Most people don't know I'm sick, or have a vague idea that I've got "some thing." Once you tell people what's going on, what it's like, they never look at you the same way again. It's tragic. But it's worth it, because someone has to advocate and educate. If not me, then who?