Why I Struggle Talking About My Chronic Illness

“Everything is going to be OK.”

“At least you have a good attitude.”

“You look great.”

These are the vapid responses I usually get after I come out and tell someone a story containing the words “enlarged spleen,” “chronic illness,” “blood infusion,” or “joint pain.” Before telling anybody my story, I would have already taken the time to pin down exactly which words to use, at what points to pause, and how to transition into another topic when things inevitably become uncomfortable for one or both of us. These conversations are always interesting. They’re part performance, part science presentation, and usually a ton of experience. I’ve already had enough of these conversations that I can typically predict how a person is going to respond.

When I first decided that I wanted to start telling my story, I thought that people didn’t want to hear about my chronic illness because we were pretty much kids. Most teenagers are more concerned with SAT scores and parties than they are about blood tests and doctor visits. Then, when we got a few years older, I just assumed people wouldn’t want to hear about it because we were in college…The most fun and exciting time of our lives! Who, at our age, would be vexed about questions of the loss of life or clinical trials? Now here we are as young adults who are faced with the struggle of trying to find a balance between getting out of debt, paying rent, and still living it up on Sunday’s brunches. Most people my age don’t have to worry about being able to afford the next regularly scheduled doctor’s appointment.

Over the years, I have tried a variety of ways to bring up and have discussions about my chronic illness. What I’ve come to realize is that there is no good way to talk to people about it, regardless of their age or what stage of life they’re in. Experience has taught me that if I want to be completely honest and open about what’s ailing me, most people’s initial responses are to smile and tell me that everything will be OK. And doesn’t that make perfect sense? They want to make me feel better and this is what they think I want to hear. They compliment my appearance and they assume that this bubbly brunette shell of mine isn’t a façade that I created and perfected over several years. I have yet to meet someone with a satisfying response upon hearing my story. And now I realize, how could they? What on Earth could anybody say to genuinely make me feel better?

So, I have learned how not to be honest. How I choose to talk about my chronic illness and how I generally interact with everyone has become premeditated. I hate the thought of making anyone uneasy by forcing them to dwell on my depressing situation. The only thing I hate more than making the people around me feel uncomfortable is having the people around me feel sorry for me. I never want anyone to feel like they should pity me or like I can’t handle the things in my life.

What do I do and how do I deal with it? I put on an extensive show. The people around me believe it and often I start to believe it myself. But, after so many years of putting on this performance, the most important thing I’ve learned is to never truly forget who I am. The more I grow and discover what I want to do with myself the more I realize how badly I don’t want my disease to define me. But how can it not when it exists in the most integral part of who I am?

My immune system doesn’t work the way that it should and my cells are attacking themselves constantly, which is not something that you can really see on the outside. That’s why people are always telling me how “great” I look. They can’t see past the curly hair and makeup. Maybe they don’t want to. Maybe, for them, believing the pretense is easier than seeing the real me – the me that’s vulnerable, affected by fear and anxiety. The me that feels so weak and could burst into tears at any moment.

Like several struggling with a chronic illness, I’ve had to compartmentalize my many health problems and attempt to go on living my life with as much normalcy as possible. I only allow myself to interact with that compartment when I’m sure the time is right and only when I know that the people I’m with can handle it. Those moments and people are few and far between, and because of this, I tend to keep these conversations short and casual in comparison to how distressed I am about the whole thing.

It’s been several years and I’ve mastered how to talk (or not talk) about my life with a chronic illness. However, I don’t think I can actually say that I’ve learned how to live with my chronic illness. I don’t know how to be the real me in my life anymore. Sometimes I’m not even sure who the real me is. Maybe those are just things I’m never going to figure out, but until then, I’m going to keep up the act. I’ll put up a strong front, I’ll look great, and I’ll keep telling myself that everything will be fine.

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Thinkstock Image By: egorr