Necessary Explanations
If you were to look at me, even if you looked closely, you would think I was fine. I’m not.
I have what’s called an invisible illness, a sneaky disorder in which the patient suffers from the overworn phrase “but you don’t look sick!” Occasionally there’s the variation of “you must be faking” or “it’s all in your head”, but the stigma is the same. Unless I’m having a particularly bad episode, I look, sound and act like any other perfectly healthy 20-something.
I attribute this assumption not only to the invisible nature of my disease, but the fact that I am a spledid actor. I made a conscious decision when I was diagnosed that I wasn’t going to play it up for sympathy, or let the illness steal away my life until it defines me. As a result, I’ve made a habit of ignoring pain or discomfort and have several tricks up my sleeve for disguising what symptoms the average joe would be able to pick up on. I constantly monitor my body, making certain that I’m aware of what symptoms I’m experiencing and what that means in the grand scheme of things. I research my condition almost daily to stay informed on treatments, advances and techniques to make my life easier, as there is no cure. I am an expert in my own body, with its malfunctions and mistakes, and I use my knowledge effectively to keep hidden what is and maintain a look of normalcy.
It’s not that I care that people know I’m sick. I’m blogging about it, so secrecy obviously isn’t an issue. The trouble is how people treat me whether I am or not. If I’m having a good day and medication time comes around, people freak out when they see me pull 10+ pills out of my bag and start popping them. I’ve been accused of addiction, or dying and not telling anyone, and on one fateful occasion attempting to give someone else a heart attack. On the other hand, if I’m having a bad day and need to travel in a wheelchair or collapse in the middle of the room the accusations become about faking, overreacting, playing for attention or having self-destructive psychiatric behavior.
Truth is, it’s exponentially easier to deal with people who treat me like I’m fine. Granted, I get disapproving looks and snarky comments when I have to ride through a theme park in a wheelchair (it doesn’t help that I look like I’m 16) and hiding my condition adds to the general consensus of “faking it” whenever I do experience severe symptoms. However, this is to be preferred over sympathetic sighs, constant questions of whether or not I’m okay or being handled like a porcelain doll. I realize that I AM a porcelain doll, but that doesn’t mean I can’t aspire to be Raggedy Ann. Besides, it doesn’t seem fair to make the people around me join me in constant worry for my health and safety. I can manage that all on my own.
If anyone’s interested, this nasty little bit of undeserved kharma is called Dysautonomia, and I have a specific strand called Postural Orthostatic Tachycardia Syndrome or POTS. To make a long medical history short, I experience syncope (collapsing and passing out) and the much worse near-syncope (nearly passing out and feeling like someone really needs to just put a bullet in you and end your misery). These two are caused by my autonomic nervous system not working right and in turn not forcing my circulatory system to work right. The severity fluctuates on a number of factors (how much sleep I’ve had, if I’ve taken my pills on time, if someone over in Asia sneezed during a blue moon, etc.) and I have days of “I’m fine, I swear” and days of “Oh holy hells, who put that floor there?!” I deal with the symptoms as best I can – sometimes I get the best of them and sometimes they get the best of me.
If I didn’t make an active stand against my disease, I think it would swallow me whole. If I didn’t approach my live with humor and lightheartedness it would easily drag me down with it. That’s why I hide it – not to pretend that it doesn’t exist, but to prove that I can be stronger than that, that I can win a war against my own body breaking down. I can keep up my life, my goals and my desires regardless of how my body fails.
I might fall down, but I’m Living Falling Down.
on April 4th, 2009 at 11:14 PM
Heather this was very well written…I even knew about the disease, but you put it in a very simple and to the point description..Good Job
on July 11th, 2009 at 8:22 PM
Do you/your doctors expect a full or nearly full recovery, as in most patients who see the onset of symptoms in their teenage years?
on July 13th, 2009 at 2:34 PM
[...] why I would need to be in a disability-accessible line, reference back to the previous blog post on POTS. Florida Sun + waiting in line + uncontrolled excitement makes for a rather wobbly and [...]
on July 13th, 2009 at 3:52 PM
Unfortunately, no recovery for me. Turns out that I have a strand called Familial Dysautonomia, which means I’ve inherited it genetically and it’s been present in my system since birth. Those teenagers who develop the disease due to stress or injury can usually expect some tempering of it over time, but those of us with faulty DNA are kind of stuck with it. There are several treatments and lifestyle changes that can make living with it more bearable, but until someone invents a powerful genetic-altering raybeam which can fix that sort of thing I don’t expect a full recovery.
However, this does give me a lovely all-encompassing excuse: “I can’t help it! It’s in my genes!” It’s quite useful.
on July 19th, 2009 at 10:03 PM
Wow your a pretty strong person. The things you learn about people. Well ill get right on that ray beam for you should be done by 3490 J.Z.
on July 19th, 2009 at 11:18 PM
I wouldn’t say strong, more like obstinate. Lol, but I thank you for the compliment. As for that ray beam, I’d greatly appreciate if you would, and if you could add on a zapper that would make me lose about 20 pounds that would be great.