Meet Harper Spero
Name: Harper Spero
Occupation: Business Coach and Consultant // Host of Made Visible Podcast
Location: New York City
Skin Condition:Hyper IgE / Job’s syndrome
I feel like people with skin conditions often have a one-line explanation that they use to explain their skin to others. Tell us yours.
My skin issues have always been the one thing that I really haven’t talked about with anyone. Growing up and through much of my twenties, I was always really uncomfortable in my skin. Even as I got more comfortable managing my illness overall, I still shied away from accepting how my skin issues affect me. It’s still something I’m trying to accept and appreciate.
What are you up to in life right now?
In July 2019, I launched a podcast called Made Visible. On the podcast, I share conversations with people living with or affected by invisible illness. When I’m not working on the show, I am working with my clients who are solopreneurs/independent professionals/freelancers to help them launch, build, and maintain their businesses.
So you have a long and complicated health story—and in 2012, it got so complicated that you ended up undergoing major surgery and totally changing your career. Tell us about it.
When I was 10 years old, I was diagnosed with Hyper IgE, also known as Job’s syndrome. It’s an extremely rare immune deficiency that causes skin issues and lung problems, among other things. My mom had spent the first ten years of my life trying to find a diagnosis for my symptoms, which were mostly related to my skin. I was finally diagnosed at age 10 (after hearing from many practitioners that they had no idea what was going on), but at that point I was focused on trying to be a “normal” kid. I never wanted to be defined by my diagnosis, which led to me spending the first 27 years of my life hiding from my health, dealing with symptoms as they arose but never facing my health head on. That included my skin issues: cysts, boils, warts, eczema, and other really fun stuff. It was all stuff that I could mainly hide under clothing and pretend didn’t exist to the outside world.
That all changed in late 2011, when I found myself out of breath and on the verge of collapsing whenever I walked anywhere. As a native New Yorker who walks a lot, that was terrifying. In February 2012, a pulmonologist discovered a cyst the size of a golf ball in my right lung and told me I needed to have surgery to remove it. When I consulted the immunologist who diagnosed me with the Hyper IgE / Job’s syndrome, she told me I wouldn’t survive the surgery if I underwent it. That’s when I was introduced to the National Institutes of Health (NIH) Infectious Disease team who provided me with a third opinion. They said the surgery was risky, but I should do it. So on March 5, 2012, I had a lobectomy to remove a quarter of my right lung.
This surgery turned my world upside down, and it was hard to hide and ignore my health any longer. I started sharing with friends, writing about my story, and owning my health. I recognized that I had the ability to take control over my health so I started eating healthier, meditating, practicing yoga and creating a lifestyle that allowed me to prioritize these things. I had been working a full-time, high-stress job in beauty PR, and this health scare helped me acknowledge that I needed to do work that was more fulfilling and provided me with more flexibility.
I’m now seven years out of surgery and still so grateful to be alive. There have been challenging moments, but I am very fortunate to have my team at the NIH, a few doctor’s in NYC, as well as my friends and family to support me—something that’s a lot easier for them now that I’m not hiding my health.
In addition to being conscious of what I put in my body, I’m also now conscious of what I put on it. A few years ago, I transitioned 99% of my skincare to natural products, and it’s completely changed the look and feel of my skin. There were years where I would wear long sleeve shirts in the summer and times when I’d hope it would rain so our adventure to the beach would be canceled. My skin was such a mess that I didn’t want anyone to see it, least of all see me in a bathing suit. I recognized that alcohol played a huge role in my skin flare ups in my early twenties, when I was partying hard during and after college. For years I tried medications, creams, and ointments for my skin, and they often worked short-term but didn’t make a long term impact. Changing my skincare products, on the other hand, has made a huge difference. I swear by brands like Naturopathica, Ursa Major, Ilia and Supergoop.
Today, my skin is the least of my worries as it relates to my health. I’m too concerned about my lungs, which I need to consistently monitor. With my skin, I’m at a place where I wear whatever I want, and I no longer hope for rainy beach days (in fact, give me as many sunny beach days as possible!). I’m learning to own my skin more. It’s not easy, but I’m working on it.
You host a podcast, Made Visible, where you talk to people with invisible illnesses. Why did you decide to start making the show?
After my surgery in 2012, I was looking to connect with others who were facing chronic/invisible illnesses. I found that most content, both online and via podcasts, was extremely depressing and I couldn’t relate to it. I wanted to continue living my life and not be held back by my health.
As I started to publish essays about my invisible illness and discuss my experience with clients/friends facing similar challenges, I realized that sharing my story wasn’t just empowering for me. It helped others with invisible illnesses feel seen while also raising visibility of the issue for people who hadn’t even considered invisible illnesses before. With this in mind, I set out to create a platform to showcase the stories of others, and Made Visible was born.
Are skin diseases invisible illnesses? My sense is that while skin diseases are visible to others because they're on the surface of the body, there are invisible elements to living with skin diseases that the public can't see—what it takes to care for one's skin day to day, the emotional toll a skin disease can exact, etc. I'd love it if you could help me unpack that.
I think you’re absolutely right. It’s visible in the sense that my skin doesn’t look like most people’s skin. I have a lot of scarring from scratching my body and face when I was younger. There were also times when I’d have allergic reactions to things or would be sensitive to foods, and my skin would flare up. I’d take an allergy medication that would knock me out. My friends would say, “but you don’t seem sick” or “but you don’t look sick.” The reality was, my skin did look different, but people didn’t always understand that there was an underlying illness.
Where can we keep up with you?
@harper_spero (Twitter and Instagram)