Post #46: I suck at Crohn's

I'm not a doctor or anything, but I'm prettttty sure that car is going the wrong way. This is not going to end well.

I went out to lunch today with my hairstylist/life coach/surrogate aunt today. She's unapologetically in love with cats, waiters, and old Jewish women. A good 50% of her wardrobe consists of leopard print. She stores things in her bra (cell phone, money) so it constantly looks like she's feeling herself up. She calls everyone "honey" and does so in such a genuine fashion that she totally gets away with it. She rolls her eyes at my bullshit and gives me insight into my problems, whatever they may be. We meet for lunch and end up talking for 2 hours. She always gets the check. I heart her.

I was telling her about something insensitive that someone had recently said about my Crohn's. She's had her own share of health issues, so we can commiserate about these kinds of things. I was saying how incredibly frustrating it is when other people assume they could handle your disease in a more productive/functional way. I've encountered this a lot, and I've been guilty of it as well. Looking from the outside in, it's easy to think, well, are they doing everything they could be doing? Why are they still sick? If I were them, I would be more proactive. I would do x, y, and z to make sure I was really addressing the issue. THEY ARE BEING SICK ALL WRONG!

The message may be cloaked in fake concern, obnoxious advice, or endless anecdotes about the many people they know who have the disease but are handling it better, but it all comes down to this, at the end: you suck at having this disease.

Do you know how hurtful it is to have someone essentially tell you you fail at being sick? I'll tell you: pretty fucking hurtful. If you hadn't noticed, this is something of a sore spot for me, because part of me thinks they might be right. Maybe I should be "over this" by now, maybe things should be better. Maybe I should only eat cream cheese and bundt cake, like my friend's sister's co-worker's niece did-it really nipped that Crohn's in the bud! Maybe I should be running 5 miles a day to decrease my stress levels. Maybe I should be doing hot yoga and drinking kombucha and getting acupuncture (I strongly dislike all of these things).

Eventually, my thinking brain clicks on, and I remember: FUCK YOU. How dare you suggest that you could do this better? I'm doing what I can, when I can, trying to make difficult decisions and live my life with a chronic illness that kind of dropped into my lap right after my last birthday (happy birthday to me!). This is not a graded exercise. This is not an Olympic event. You can't GRADE MY MOTHERFUCKING PERFORMANCE. I'm not aiming for gold here-I'm just trying to figure shit out. That's more than good enough for me, and it will have to do for anyone else.

Hhmmph.

My hairstylist/life coach/surrogate aunt told me a theory one of her clients had about illness: people expect the McDonald's experience. You get a disease, go through the drivethru (see your doctors, get your surgery, etc.), and emerge with pills in hand-and a cure. It's a simple trajectory, and one that people can relate to. You got sick, and then you got well. Illness done, fries consumed, moving on with life.

My disease will never function exactly like that. There are treatments, but no "cure." There will be periods of sickness and (this is the goal) periods of relative health (remission!). Some symptoms will be unexpected. I will never drive away with a McFlurry and a simple solution.

I write all of this to get it off my chest, for sure, but also because as much as I hate the impulse to judge people's "illness performance" I do the same. freaking. thing.

At lunch, my hairstylist/life coach/surrogate aunt  was telling me about a recent health scare, and my first reaction was to tell her how to deal with her health problem. I wanted her to be more aggressive and assertive, and see the BEST doctors at the BEST hospital immediately. She listened to me rant, and then kind of raised an eyebrow and smirked. I was taken aback at the forcefulness of my reaction, and she calmly told me that she was dealing with this in her own way, in her own time, with her own doctors. I jumped in with my opinions because I was concerned, and I care about her.

Sometimes people say mean, stupid shit, and you should call them on it. Sometimes, sometimes, they might say stupid shit out of love and concern. And sometimes, when you say stupid shit or lack the self awareness to realize you're exhibiting the very same behaviors that you deplore, it's useful to have a friend who loves you enough to point it out.