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The Illness You Can't See Behind My Smile on My Wedding Day

This is a picture of me on my wedding day.

If I seem happy, it’s because I was, but I was all kinds of other things too.

Tired, nauseated, and scared – but not about getting married. More about ruining my own wedding by throwing up or having some other gastro-intestinal misfortune. I was relieved too, that it was all going to be over very soon and that it had passed thus far without said misfortune.

Three weeks before my wedding day, I was diagnosed with celiac disease. At that point I was down to 94 pounds and I was taking Zofran for the nausea, but I still couldn’t manage solid food. I had heart palpitations and felt so weak I had to sit down in the shower. I was losing my balance and I walked like someone staggering on a boat. I was cold all the time and wrapped myself in down and fleece on warm days in June. Every part of my body ached. The exhaustion was debilitating, but I spent half my nights awake because I was too nauseated to sleep. And then there was my stomach that protested everything I attempted to consume. My stomach felt like an evil jello snake attempting to devour itself. In short, I was toxic.

But I also had a wedding to plan and two spring semester final exams to write, not mention those poor students I was tutoring. If there was one thing I didn’t have time for it was being sick. Something had to give. I met group partners to work on our final assignment in the morning and skipped class in the afternoon to rest. I had come to appreciate that a three hour lecture spent with my aching body folded into a hard plastic chair, while I silently willed myself to not vomit and my professor to not to call on me was far less edifying than reading the notes online. My husband planned the whole wedding. I picked out a white sundress and some shoes at the mall and iced the cake my mother made.

By the time I said my vows I was feeling better, but also pretty crappy. I had yet to learn about spoon theory, but I had already learned to manage my life like a spoonie. I distinctly recall my husband asking me if I was sure I didn’t want flowers. My response was, “It’s just one more thing I don’t have energy to deal with.”

He suggested asking for a friend to help by picking them up, but I refused. At the time, just choosing the flowers and requesting the help were still too much. So I got married without flowers, gown, theme, or decor of any kind. And frankly, if I had thought to have it done from my bed, I probably would have done that.

The picture you see above may be worth a thousand words, but it will never tell you the story of the compromises I made and continue to make on account of my health. A counsellor once observed that although I am not able to go on as I once did, I am still free to purse the things I love, I just have to go about it differently. Usually, differently means more slowly, less frequently, for a shorter duration. But a lot of the time it comes down to tradeoffs. If I go out this evening, tomorrow may well be shot. If I’ve been out for appointments today, having dinner with you, even an early one, is out of the question.

Being chronically ill means I often put a great deal of energy into things that are effortless for healthy people. And sometimes, it makes me feel bitter, because it feels like I’m working harder for less. When you’re chronically ill, the world doesn’t give you credit for that work and yet it does take notice that you are achieving less. On some days that burden is as heavy as the one of the illness itself. For some reason, that burden never shows up in photographs.

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