Before I get to the meat of this post, I want to preface this by saying that these are MY issues. They relate to things people say to me, here and in the world outside my computer, but I’m not blaming anyone. I don’t want anyone to feel like they can’t talk to me or that they have to tiptoe around my issues. I write about this because it’s stuff I struggle with, and writing helps me find clarity.
Okay, on to the actual post.
I blog a lot about living with ulcerative colitis. It’s chronic, it’s incurable, and sometimes it sucks a hell of a lot. When I blog about it, I get called things like inspirational, brave, strong. Those words make me squirm inside. It’s a complicated issue, and my feelings come from several sources.
First off, I’m uncomfortable with compliments. They challenge the view of myself that my family taught me, and that feels unsafe. I know it’s not actually unsafe, but welcome to PTSD. Parts of me are afraid that if we accept that we are strong or brave or whatever, our family will find out, and we’ll be punished, ridiculed, and shamed. I’m better about this than I used to be. Now, I can hear a compliment without arguing that it’s wrong or brushing it aside. Most of the time, I can even see why someone would give me that compliment. But it still makes me feel wrong, like I’m lying about who I am because if people saw how bad I really am, they’d hate me.
That’s my issue to work on. That one’s all mine. The rest are some combination of my issues and societal issues. Still, I’m not blaming any of you for these.
Basically, I want to be like everybody else. I want to be just a person. Obviously, I want to maintain my uniqueness and selfhood, but I don’t want that to center around my illness or my response to my illness.
There’s a sociological concept called othering. Basically, it’s human nature to divide ourselves into groups and classify anyone who’s not part of our group as “not one of us.” This is a good basic explanation of it. It’s an instinctual behavior and isn’t inherently bad, but it’s one of those chimp instincts that I think we’d do better if we outgrew. (Seriously: chimps, upon encountering a chimp from another group, will literally tear it apart. Their very close relative, bonobos, will initially be guarded toward the outsider but will eventually accept it, as demonstrated through grooming and sex. I’m not saying we should have random sex with people outside our group or pick fleas off them, but we could learn from the bonobos’ ability to include the outsider.)
Setting a sick or disabled person up as an inspirational figure is a subtle and unintentional form of othering. It says, “You’re not like me. I’m not as strong or brave as you; I couldn’t deal with what you deal with every day.” It sets that person up as better than the speaker, but it separates them. Think of someone you think is better than you, someone you admire. Now imagine hanging out with them. When I imagine that–and it’s probably the same for most people–I imagine having trouble talking to them for fear of sounding stupid or weak or boring. I admire them, but I have trouble being able to relate to them as just a person. And I don’t want to be hard to relate to or talk to. I don’t want people to be afraid I’ll think they’re stupid or weak or boring. I just want to be a person, just like everybody else. It’s hard to reach people when you’re up on a pedestal.
And it sets up these expectations that you always have to be strong or brave. I don’t want to worry that I’ll disappoint or discourage people if I say I’m having a really bad day and everything sucks and I don’t want to get out of bed and I feel totally hopeless. I want it to be okay for me to fall apart sometimes. I want someone to say, “You don’t always have to be brave. It’s okay to cry. I’ll take care of you for a while.” (This one is probably more my issue than a societal one, but there are societal components.)
The biggest thing, though, is I don’t want people to think they could never deal with what I deal with. You could! I’m really no different than you. If you’d talked to me a year and a half ago, before I got sick, and described UC to me, I would’ve told you I couldn’t deal with that. There’s a quote I’ve seen floating around Facebook that annoys me a little because it seems overly trite and inspirational out of context, but in this context it works: “You never know how strong you are until you have no other choice.”
It’s true. UC didn’t give me a choice. It just attacked. It very nearly killed me, and that pissed me off. Nothing gets to kill me without my permission, dammit! So I fight. I know the realities of my disease. I’m on the severe end of the spectrum; I’ve been through most of the medication options currently available; I will probably end up having surgery for either a J-pouch or an ostomy. I know what to expect, although not always when. I know how to get poop stains out of mattresses and clothes (except the bright orange ones–those will NOT come out of my off-white sheets), I know how to act like I didn’t just crap my pants in the middle of a political event, and I now know how to buy adult diapers without losing my dignity. You think you could never learn those things, but you could. You might have to learn a lot of poop jokes to cope with it, but you’d learn the stuff that seems impossible. Hell, you might even do better than me and learn how to get the bright orange stains out! (If you have learned that one, let me know.) I’m just like you, and you’re just like me. You could deal with this if it were dumped in your lap.
I’m just a person; I crap my pants like everybody else. (Wait, everybody else doesn’t actually do that. Oh well.)