What It's Like Being Young, Female And Chronically Ill

I don’t want my disease to define me.

08/25/2016 05:32 pm ET Updated Nov 26, 2017

“You’re handling it so well.”

“You look great.”

“I’m sure everything will be fine.”

These are often the trite responses I hear after delivering a story containing words and phrases such as “bone marrow biopsy,” “enlarged spleen,” and “blood cancer.”

Amy Andresen

Before telling my story, I would have already selected which words to use, at what points to pause, where to lock my gaze, and how to transition to the next conversation. It’s part art, part science, and a whole lot of experience. I know how to have these conversations, and I can usually predict how people will respond.

See, I used to think that people didn’t want to hear about my chronic illness because we were 16, and high school sophomores worry about SAT scores, not medical diagnoses and hospitals visits.

... I’m realizing that chronic illness is never something people want to talk about, no matter at what age or phase in life.

Then, I assumed people didn’t want to hear about my chronic illness because we were in college ― the best four years of our lives! Who could be bothered with such questions of mortality?

Now, as young adults, we’re faced with the struggles of paying rent and boozing it up on Sunday brunches. Most 25-year-olds don’t worry about affording monthly doctor’s visits, treatments and tests.

Over the years, I’ve tried different ways of bringing up and talking about my chronic illness, but I’m realizing that chronic illness is never something people want to talk about, no matter at what age or phase in life. I’ve learned that if I talk honestly about it and reveal my true anxieties, most people’s immediate reaction is to tell me everything will be okay.

I get it, it makes sense. They want to make me feel better by complimenting my appearance. They dare to assume that the confident blonde exterior isn’t just a facade I’ve created over the years, and that I just have to continue to be my strong self. But nobody really hears me. Nobody ever has a satisfying response, and how could they? What could anyone say to make me feel better?

I don’t want to make anyone uncomfortable by forcing them to think about my morbid situation.

So, I’ve learned to not be honest. I’ve become calculated in not just how I talk about my chronic blood disease, but in how I interact with everyone all the time. I don’t want to make anyone uncomfortable by forcing them to think about my morbid situation. I don’t want to sound unnecessarily dramatic in wondering if I’ll live past 35. I don’t want friends to feel sorry for me or colleagues to think that I can’t handle the same workload as them. So what do I do? I put on a show. Everyone buys it, and occasionally I even fool myself. But I never really forget who I am.

As I grow up and try to make my mark in this world, I don’t want my disease to define me. But how can it not, when it exists in the most fundamental part of who I am? My bone marrow does not function like it should, and as a result, I have a whole host of health complications ― none of which affect the way I look. Evidently I look great, people tell me all the time (they buy the show). But hearing this only reminds me that no one wants to see or know the real me—the vulnerable me, paralyzed by anxiety and fear. The me that could fall apart and burst into tears at any moment.

Like most people who live with a chronic illness, I have to compartmentalize my health problems and go about my life as normally as I can. I only engage with that compartment when the time is right and when the person I’m with can handle it. Those times and people are few and far between, and even then, I keep the discourse high-level and casual compared to what I’m really feeling inside.

I don’t want my disease to define me. But how can it not, when it exists in the most fundamental part of who I am?

I have learned how to talk (and not talk) about my chronic illness. But it’s been 10 years, and I haven’t learned how to actually live with a chronic illness. I don’t know how to be the real me in my life anymore. I’m not sure it’s something I will ever figure out, and until then, I’ll keep up with the show. I’ll stay strong, I’ll look great, and I’ll tell myself that everything will be fine.

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