As my 33rd birthday nears I find myself having this repeated pop-thought from which I can’t seem to get away. It’s the realization that I’ve lived with this illness longer than I ever got to live without it, or at least longer than I realized I was living with it.
But that’s just it, I’ve been LIVING with it. I’ve traveled all over this country, eaten more foods than I have any right to, and met more interesting people than I ever thought possible. So why have I repeatedly pushed this thought from my mind over and over, even though I crossed this linear threshold two birthdays ago?
Surviving this long doesn’t feel like a badge of honor. Nor does it feel like something worthy of crying over. It just is what it is. The time that has passed doesn’t change the fact that I have it. I’m not running out some clock where there will be a cure at the end of the buzzer. But I’m also not stuck in the mud feeling hopeless and as if my life is non-existent because of this silent passenger that rides with me through this life. Is this what acceptance feels like?
To me the idea of acceptance is not a stagnant one. It’s a sliding tab along a strange spectrum made up of flares and non-flares. I slip back and forth, staying on one end for longer than I’d like, but knowing I’ll slide over eventually. Sometimes I feel #FibroStrong as if I am a type of warrior that has one some of the battles, even if not the war. But sometimes, there are times like today where the pain and fatigue make it easy to forget I ever knew what normal was, where the anger and denial creep back into the forefront where I don’t feel like I can fight anything off. But as upset and disappointed I may feel from having a flare for my birthday weekend, I’m not in a puddle of tears (yet). That’s progress. That’s a level of acceptance.
As a woman I hold myself to a ridiculously high standard. As a #Spoonie and person with a seriously INVISIBLE disease, I hold myself to an unattainable standard. I expect more from myself on a non-flare day than the average healthy person does on any old Tuesday. On a flare day, I expect myself to be able to run a marathon, build a skyscraper, and make dinner for my hubby. All of these things are equally ridiculous during flare ups. But after 18 years of having this disease I’ve learned to talk myself off the ledge a little sooner than when I first started out. Again, that’s progress.
Part of being in my thirties is starting to not give a S*** what other people think, right? Well, being treated or seen as a hypochondriac is something I think I will always care about. When I am not believed, or worse, judged for looking healthy but still not working, a piece of that 15 year old who was scared of what her classmates thought every time she had to be pulled out of class to go to a doctor appointment comes to the forefront. My frustration of not being believed when I FEEL what it is I am feeling during a flare is rooted in that original judgment.
I guess what I am trying to say is that my birthday wish isn’t to wake up and have this disease ridden from my body. I’ve wasted too many candles on that. I wish for all of you skeptics or apathetic people around to believe us. Root for us. Most of all, don’t forget us when our illness isn’t interesting to you anymore. Unlike other illnesses, this won’t go away. It can’t be excised, radiated, or cleared up with medication. Its persistent, bull-headed, and permanent, just as we need your concern to be. We know there is little you can do to comfort us or take away the pain. But please, don’t add to it by pretending the illness and symptoms aren’t there. Don’t forget to see that those things are the center pillar of who we are. It’s as if our spines are made up of Fibromyalgia and to ignore it means to deny us that core and allow us to fall over, crumble, and not sit up tall with pride and self-respect.