I spent the first 27 years of my life hiding my invisible illness.
I was diagnosed with Hyper IgE/Job Syndrome when I was ten years old. That diagnosis wasn’t easy to come by; my mom had taken me to see countless doctors, specialists, and healers. When an immunologist finally gave us a diagnosis, we learned the name of the disease but not much else. This immune deficiency is incredibly rare, and nobody knew what to do with me.
Growing up, I was so ashamed of my illness. I didn’t talk about it, and many people assumed I just had allergies or was sick with a cold. I was used to being uncomfortable in my own skin. And I didn’t want to be defined by my illness, so I didn’t even tell my best friends about it. I told no one. And I could get away with that, because my symptoms were fairly manageable. I was able to live a pretty normal life. I didn’t have to focus on my health constantly--instead, I treated symptoms as they came up. I avoided the big picture because nothing felt out of control.
Several years ago, that all changed. In 2011, a golf-ball-sized cyst was discovered in my right lung. Doing surgery was risky because of my immunodeficiency, but I had no choice. With the cyst, I couldn’t even walk two city blocks or a flight of stairs to my apartment without collapsing.
Fortunately, the surgery was a success. I felt so grateful to be alive. During my recovery, I also realized that I couldn’t hide my illness any more, and I didn’t want to. I couldn’t lie to my friends and tell them everything was okay when it wasn’t. I needed to start sharing my story.
And I did. I started writing and publishing essays about my journey with an invisible illness. When I became a business coach, I began sharing my experiences with the clients who could benefit from it. I opened up to friends and extended family members about what my life looked like. I went about my “normal” life, but I stopped hiding that important part of my identity.
I even began celebrating the anniversary of my surgery–March 5, 2012–with family and friends. For me, marking that day is a reminder that you can go to a dark place and come out the other side.
As I started to be more open about my own journey with an invisible illness, I thought about creating a platform for others to share their stories. Thousands, if not millions, of people around the world are struggling with invisible illnesses. What would happen if we all stayed silent?
That’s how the idea for my podcast, Made Visible was born. I wanted to create a platform to give a voice to people with invisible illnesses. We all know someone with an invisible illness (and may not even know it!), if we don’t have one ourselves. By spotlighting the raw, personal stories of people living with invisible illness or caregiving for loved ones, we can change the conversation and make these experiences visible.
Since launching Made Visible, many people have reached out to me with their own stories of invisible illness. Some people have spoken up about their illness before, but others never have. This is exactly why I started the podcast. To make people feel less alone, and to spark the conversations we need to be having. I’m grateful to everyone who has shared their story with me. I know that in many cases, it’s not easy. But it’s how we get to the other side of the story.
About Harper Spero:
Harper Spero is the host of Made Visible Podcast. She is a native New Yorker, business coach, music lover, Israeli food enthusiast and has spent her entire life managing an invisible illness. Talking about her invisible illness is something she's only begun doing the past few years, but it's been extremely freeing. It’s helped her friends and family learn how to support her better. She wants the same for others who are silently struggling.