Monday, September 1, 2014
Life with an invisible illness has it's pros and cons. The most obvious positive I can think of is this ability to "pass" for "normal" or "healthy" when you're feeling awkward or shy or don't feel like talking about your illnesses. Sometimes it's nice to "pass" because it allows you a moment of feeling like you are not defined by the disease(s). The negatives are endless, but for most of us the worst is the "but you don't look sick" denial other people tell us, as if we have to look a certain way for this to be real to them. To me, in a way, this feels like victim blaming (in cases of sexual assault) or slut shaming. ***I make these analogies with no intent of disrespect to victims of the above experiences. I say this having experienced both victim blaming and slut shaming. It's just my experience that the feelings are similar to the "but you don't look sick" comments. The common thread there is this total invalidation of another persons truth, in this case mine.
I've ranted about handicapped parking on Facebook and I've alluded to it here: http://lifewouldkillme.blogspot.com/2013/08/psa-its-not-just-handicapped-parking.html
I try to keep good perspective on it, but that's easier said than done. It really irks me. This is coming back up because of something that happened, or rather didn't happen, on my birthday.
Kevin and I went out to dinner in Little Italy. The alarm he has set to go off every two hours (all day) went off toward the end of our meal. Remember what I said about being able to "pass" for "normal" when you're feeling awkward or shy or don't want to deal with your illnesses? At a nice dinner on my birthday would be a great example of a time when I'd like to enjoy pretending to be normal.
(If you read my Facebook post that night, I was enjoying laughing at the restaurant owner asking if we had a babysitter then 180-ing to 'oh it's your 21st' when I said it was my birthday. I liked that. I don't mind passing for having a kid or two at home, because the reality is I'm not healthy enough to even consider having children at this time. And if my tired face looks like that of a loving mother, then it's a special, beautiful kind of tired-looking.)
Anyways, nice dinner, birthday... I hesitated on pulling out my pills. I told Kevin, as I have a time or two before, that I hate pulling out my pill bag in public. There is nothing that screams "I'm sick!" louder than my pill bag. Figuratively speaking, of course. However my pill bag actually IS noisy. It's a gallon-sized Ziploc freezer bag. And then the cases that the pills are in crack open and snap shut. And the pills jingle-jangle up against each other. There's no subtlety to it at all.
The view from one side. My 4-dose-a-day pill dispenser. If the alarm goes out in public, this is the bad boy I have to pull out. And I always do it awkwardly, shamefully announcing to the room that though I don't look sick, turn me inside out and it's a different story. In this you'll find nerve blocks, muscle relaxers, extended release pain pills, short release pain pills, anti-virals, probiotics, allergy meds, etc etc etc...
Now, if I'm fumbling with that 4-dose-a-day guy, this is the side you are seeing. My "extra" pill jars that aren't daily takes, but pills I have to carry around just in case. My large 1-dose-a-day pill dispenser for bedtime (because my nighttime medications are way too large to fit in the smaller boxes of the 4-a-day case). A thermometer. Purell wipes. Bacitracin. An antibiotic super-strength version of bacitracin (because with my immune system, cuts aren't normal cuts--they are little vestibules for massive infections to grow in). Nasal spray. Eye drops. Chapstick (dry mouth/lips is no joke). Headphones for when I go to PT. Ponytail holders that I usually wear on my wrist, but sometimes take off because of swelling. Oh and that manilla envelope visible on both sides of the bag, that is my most recent letter from the Social Security Administration denying me coverage for disability. (I don't save it because it makes me feel good; it has instructions for what to do next.)
Anyways, the point is... I get really embarrassed to take out my pill bag in public. I tell Kevin if strangers mistake my gained weight for pregnancy I'll go along with it rather than go through the awkward correction. I tell Kevin if strangers mistake my pills for cancer medicine I will go along with it, rather than trying to explain my actual illnesses (which no one has heard of and few take seriously). I don't mean to make light of cancer, it's just that people understand cancer. Cancer, unfairly, hits people of all ages. So strangers can wrap their heads around that. Also, some types of cancers have cures and that innately makes people more comfortable with illness. But with my illness, people desperately try to find a cure and do the research I long ago gave up doing, because it's too hard to accept that it doesn't have a cure. I imagine it makes people feel very helpless that there isn't a cure, because that's the part a lot of people get stuck on.
The thing that hit me when I finally took my pills at my birthday dinner was no one had ever asked. On the average summer day, I start taking medication at 8:30 am or 10:30 am. From there I take medication every two hours, no matter where I am. The number of people who potentially see me taking pills is exponentially higher than the number of people who see me getting in or out of a car with a handicapped placard. Yet I can't count the number of comments or looks I get over my handicapped tag. That number shouldn't be higher. Isn't there some law of averages?
You know that feeling of being watched? Similarly, you know that feeling of walking into a room and all conversation stops, so you know you were being talked about? Well, call me paranoid if you want, but that's what happens. You can feel people staring, for half a second, and then diverting their eyes away. Only it's every stranger in the dining room at the same time. Conversations momentarily stop. If the waiter was on his way to my table he U-turns for the kitchen.
For some reason this all hit me at my birthday dinner and I got really upset about it. I started ranting to Kevin about it. "Why do people ask about my handicapped pass but not my pills? Why does that happen? What is the difference? No one has ever come up to me and confronted me on taking my pills. No one has told me shame on me for taking my medicine. No one has ever asked me to justify my medication to them, though people feel entitled to ask that of my handicapped tag. And there's no way I just happen to encounter nosy, judgy people at the car but not anywhere else. No way. So what the fuck is up with that?"
And then I answered my own question, and the answer was even more upsetting to me. "Pills, in strangers' minds, are tangible proof that I'm really sick and it makes them feel awkward and intrusive to ask? Because it's real to them, that amount of medication is really real and I look too young to be this sick so they get uncomfortable. But the handicapped tag, I could just be some punk illegally using her mom or grandma's tag. Fuck that."
So, this is both a rant and I guess an repeat PSA like the old blog post I linked earlier. Think. Be kind. Stop judging what you don't know.
Today, just for right this moment, I'm going to use the faceless disconnect of the internet for mini-bravery, or at least not being ashamed.