“Hello, pleased to meet you. I’m sick.”

It can be hard to meet new people.

To be honest, I often feel awkward meeting new people. Do I shake hands? Bow my head? Do that quick upwards head jerk, the surfer’s “what up?” And that doesn’t even take into consideration the circumstances of our meeting: “Hello officer, yes, we’re aware we set off the alarm…!”

Now meeting someone is at a whole new level of awkwardness. At some point, generally very early on in a young relationship, I’m going to have to confess that I have an invisible illness. It’s a moment that fills me with sadness, because I can’t help but feel that from that second on, this shiny new thing, with less weight than dandelion fluff, is about to be transformed into a lead balloon. I will never be the same in that person’s eyes as I was before I confessed to not being able to do something, eat something, be something.

Every time, I feel blindsided. Words tumble out in a stuttery stream.

  • “Oh, yes, I’d love to go out for coffee with you. Um, just so you know, though, I’m going to actually be getting peppermint tea because, um, I can’t drink coffee. I’m sick. I can’t do caffeine. But don’t worry, you can’t catch it.”
  • “I’m sorry. I’d love to go on a photo hike with you, but I’m not strong enough. I’ve got this illness and I’m just recovering from a bunch of tests and a surgery and if I go you’re probably going to have to carry me back.”
  • “I can’t split the pizza with you guys. I’m sorry, but my body just doesn’t tolerate… well, food, anymore.”

I feel like I should practice in front of a line of stuffed animals. “Hello. My name is Butterfly. I have an invisible illness. You can’t see it, just like no one can see when you have a headache. But just like a headache, it’s very real. And like a headache, you can’t catch it from me. I’m sick, but I will still want to do things with you. We’ll just have to do them differently.”

I try to stay away from specifics, partly because I sometimes feel as if doctors are testing out diseases and syndromes, like a chef throwing spaghetti at a wall to see if it’s done. Partly because, occasionally, the realities seem too frightening even for me to face in that situation, right then, right now.

Still, the person on the other end of this conversation often has questions. Sometimes they’re invasive questions, and then I’m evasive. : ) After all, although I may be sick and passively active for greater disability awareness, I’m not exactly in the satisfy-morbid-curiosity department. But the more that genuinely interested, thoughtful people know about my conditions and the reality of living with invisible illnesses, the fewer battles the next generation will fight. Or my friends. Or my family. The disability minority group is one of the few that you can join at a moment’s notice, after all. So I take deep breaths, picture a peaceful place, and answer the questions that I can. There are four questions in particular I know I’ll have answer – and I know I’ll have to try, even if I don’t have a fancy medical word for the particular demon I’m facing down when the questions smash into me.

    1. Is it contagious?
    2. Is it curable?
    3. Is it treatable?
    4. How long will it last?

Four more phrases to practice in front of my stuffed animals, who despite their rather fixed stares are a very non-judgemental audience. 🙂

But the timing of this conversation isn’t something that I can practice in front of a fluffy yellow duck or blue elephant. It used to be my “invisible illness” was a good deal more invisible. I could control or even altogether avoid the timing of the inevitable confession. Instead, I could first focus on the myriad of other things that make up constellation me, burning bright: Graduate Student. Musician. Photographer. Bad chef. Many times, though, invisible illnesses aren’t as invisible as we might like. I frequently run into people now with gimlet eyes and lightspeed brains. One glance, and they already seem to know all. More unobservant people might not add up ports or frequent trips to mysterious unspecified appointments, but even the most oblivious can’t miss it when my body does a party trick like passing out at someone’s feet. Whether I like it or not, being ill is part of who I am too, right now. I have to accept it.

Which means that I also must accept that these relationships formed After are going to be different. This new relationship will stand or fall not based on its foundation Before, because that doesn’t exist. It will be based on the person on the other side, and me, as I am. It doesn’t matter that much after all when that conversation happens. Yes, I am sick. Yes, that may be the first thing we discuss, Now. But this fact doesn’t mean the rest of me doesn’t exist. So yes.

Hello, pleased to meet you. I’m sick.

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