Yes, I Have an Invisible Illness. But That’s Just One Part of Who I Am

For more than half of my life, my health didn’t dictate many decisions. It didn’t stop me from going to camp, having sleepovers, going to college, getting full-time jobs, or starting a business. I lived in a shoebox-sized dorm room during my freshman year of college with two roommates who had no idea my health was any different from theirs. I hid my situation well because I didn’t want anyone to think of me as the girl with an illness. After all, my symptoms were manageable at the time—I put bandages on them, so to speak, and moved on.

But then when I was 27, my doctor found a cyst the size of a golf ball in my right lung. I had major surgery to remove it, and then had to go through intense recovery. I took medical leave from my job. These were all things that were hard to hide. This was when I started to open up about my reality: I’d been diagnosed with an extremely rare primary immunodeficiency disease, Hyper IgE (Job’s syndrome) when I was 10 years old, and had been living with it ever since.

Hyper IgE, which has only been diagnosed in a few hundred people since it was first discovered in the 1960s, manifests in recurrent bouts of eczema, lung and sinus infections, and skin abscesses. I spent years trying holistic treatments, diets, and medications in an attempt to manage my symptoms as they arose. Up until my surgery, only my parents knew about my diagnosis. I’d been able to hide my symptoms from everyone else (and myself) pretty well. But clearly, my health had gotten to the point where I couldn’t ignore it anymore.

Around the time of my surgery, I began looking for stories that resonated with me. Had anyone gone through a situation like this? Were people willing to share their health stories? Did anyone else feel as alone as I did? 

I walked around the health and self-help sections of the Barnes & Noble in Union Square and flipped through books looking for passages I could relate to. I purchased a few books, and once home, I filled the pages with yellow highlighter markings. “I was pushing hard against something that wasn’t going to go away,” wrote Danea Horn in Chronic Resilience, one of the books that resonated most with me. This was confirmation that I wasn’t alone; that my feelings were valid.

Even though my illness is a big part of my experience, I don’t want it to be the descriptor that people know before they even know my name.

But still, the idea of being “defined by my illness” made me anxious. More than anxious, actually. Terrified. After living so long in denial that my illness was a part of my life, the idea that my condition had the power to change my life and how people perceived me totally freaked me out. I didn’t want anyone to think I was any less capable of enjoying life and embracing all the things I love to do in the world. Yet that’s so often how people view chronic illnesses and other types of disability—we’re defined primarily by our health problems, often written off as burdens or portrayed as tragic figures in TVs and movies. Some people, specifically those living with diabetes or heart disease, are even blamed for their health problems. It’s frustrating to say the least.

As I read articles and essays online about people living with an invisible or chronic illness, many of the stories featured people who were much sicker than I was and couldn’t get out of bed or leave their home, or had short-term health issues—neither of which I could relate to. There were no stories of people living “regular” lives while managing and still acknowledging their illnesses. I wanted to know more about the many ways people achieved that—because I so wanted it to be possible for myself, too.

My podcast Made Visible was born in July 2018 to do just that—share stories of people living with or affected by invisible illness. I was clear from day one that I wanted the focus to be on people who had conditions that were invisible—people who went to school, had jobs, were in relationships, had friendships and lives outside of their health, like me. How were these people aiming to live “normal” lives? How did they define themselves and their health? How did they not want to define themselves?

I was initially worried that starting a podcast about invisible illnesses would give others permission to define me by my health. Even though my illness is a big part of my experience, I don’t want it to be the descriptor that people know before they even know my name. But I’ve learned that it’s another part of my life. I’m also a business owner who has helped others launch their own successful businesses, a travel lover who splits her time between the U.S. and Israel, and a deeply social person who loves to go to concerts and festivals. As my new doctor told me last fall: “You are not defined by your lungs, you’re not defined by Hyper IgE Syndrome. I want you to remember this. Live your life.”

That said, I’ve had to come to terms with the reality that there are times when my invisible illness impacts my life—especially now during the pandemic. Every time I hear the CDC commercial say that, “people with chronic lung disease or moderate to severe asthma issues need to stay home,” I know they’re talking to me. New York (where I live) has started to reopen, but that means nothing to me. It’s still not safe for me to go out and surround myself with people in public places. While social distancing and mask-wearing limits the spread of the virus, I can’t trust other people not taking it seriously around me.

The bottom line is this: I don’t want people to always think I’m suffering or to feel bad for me. But living with an invisible illness will forever be a part of my life—and denying that or pushing through my symptoms, as I did for so long, won’t change that. My breathing isn’t normal. It’s challenging for me to walk uphill and up flights of stairs. My doctors and I haven’t found the right treatment over the last eight years. But I don’t let it get in the way of living my life as best I can.

There are certainly decisions I have to make where my health is a factor, but when I think about myself, and who I am, I don’t automatically connect “Harper” with “invisible illness.” There is so much more to me than that.