Harper Spero: Beyond My Personal Battle with Hyper-IgE / Job Syndrome

This blog post is part of a series of storytelling pieces, “Beyond My Personal Battle” dedicated to sharing an inside view of individual lives working to grow and thrive beyond the diverse challenges of illness or disability. Interviews are conducted by Mary Brimmer.

Harper Spero and the Made Visible Podcast

What is your name and what do you do?

My name is Harper Spero. I’m a NYC-based business coach and the host of the podcast Made Visible.

 

What was your journey to a diagnosis like?

At birth I was showing signs of having some sort of health condition and my mom spent the first ten years of my life trying to figure out what was going wrong. I had a lot of ear infections and skin infections. I was getting colds more often than your average kid. My mom took me to tons of doctors and specialists (Eastern and Western) in New York to find answers. A lot of people sort of just shrugged their shoulders. They’d give me medication and if that didn’t work, I’d move onto the next person hoping for answers. 

When I was ten, I went to see an immunologist who diagnosed me with Hyper-IgE or Job Syndrome. My mom and I looked at each other like “Now what? What is this? Is there a treatment or a cure?” And the answer was basically “no.” It was great to have a name for what I’d been dealing with, but we really didn’t know what to do because there were so few people living with it at that time.

I was put on an antibiotic and sent on my way, touching base from time to time. Since then, I primarily dealt with symptoms as they arose. These were all things that were more manageable and that I could navigate with the support of my parents. My friends and extended family didn’t know. I had so much shame around it that I brushed it under the rug and pretended it didn’t exist. 

What made your relationship with your condition change? 

When I was 27 years old, I was running the digital department at a beauty PR firm. It was a really high stress job and I’d walk down the street and get completely winded after two blocks. I’d think, “Okay, something’s not right here.” I went to my general practitioner who thought it was bronchitis or pneumonia. She gave me inhalers and medications, but nothing changed.

In 2012, my mom said “Enough already, something’s not right here and you have to find a specialist.” I got a referral to see a pulmonologist and she did a bunch of tests. The next day, she called me and asked if I was seated with my parents and at 27 years old, I’m going, “Um...no, but should they be on the phone?” She told me to try to get them on a conference call where she told us that there was a cyst the size of a golf ball in my right lung and they didn’t know how long it had been there. To this day, seven years later, we still don’t have the answer. That was the time that I realized that I had to take ownership of my health. Things were changing, I couldn’t hide it and I had to figure out my next steps.

What were those next steps? 

For another opinion, I went back to the immunologist who diagnosed me at ten. I told her that I was being told that I needed to have surgery to remove the cyst in my lung. She said, “you can’t have surgery. You will not make it out alive.” I was at a loss for words and with conflicting messages, I didn’t really know how to respond. 

We decided to go down to the National Institutes of Health (NIH) in Maryland because there was an infectious disease team there who had an interest in me for awhile. I knew that they had been studying my condition but I didn’t really want to own what it was that I was dealing with as a preteen and into my early twenties. I met with the team and they did a ton of tests on me, agreeing with the original doctor who said I had to have the surgery despite the risks involved. They said they’d had some bad situations performing the surgery before where people would be in the hospital with chest tubes for awhile or not survive it. They were concerned about the surgery, but more concerned with me living with this thing in my lung any longer. 

How did you emotionally deal with all of that?

It was a pretty traumatic time in my life. I remember after the visit at the NIH, I was in a Target store and emailed my best friends to say, “Hi guys, I have this condition that I’ve had for the past seventeen years of my life. I’ve been able to navigate it, but I’ve had a lot of shame around it and that’s why you didn’t know about it.”

In March of 2012, I had the surgery to remove a quarter of my right lung, where a mold called aspergillus had formed. It went very successfully and the doctors were thrilled. It made me realize that I was really fortunate that I had been able to navigate and manage it for so long, but it was clear that I needed to start taking ownership of my health and start sharing my story.

After the surgery, it was impossible to pretend this wasn’t happening or that there wasn’t an underlying issue. I thought, “Enough already, I need to share this and if I’m going to share, I’m going to go big and I’m going to publish content about my health.” My condition is so rare and I wanted to raise awareness about it and other chronic illnesses that people haven’t heard about and should.

 

What was it like transitioning back to work after the surgery?

So, I was on medical leave for two months. I remember telling my boss that I would only be out for a week and then I’d work remotely, but that was definitely not the case. I can picture a point probably ten days after my surgery where I was working while on leave and my mom told me to shut off my computer. I responded “What? I need to get work done” and she told me I needed to relax, take care of myself and prioritize myself. I think that was a real reminder that as much as I love beauty products and going to natural skincare stores, I couldn’t work in that world anymore and I needed to do something that was fulfilling to me. My world had been totally shaken up and I was reminded of what my priorities were and needed to shift what I wanted to do with my life.

How do you think your definition of self-care changed from working in the beauty industry?

I don’t think I really knew what self-care was before this time. It just wasn’t something that I really ever thought about. At the next job that I started, I was producing events for non-profit, health and wellness brands and was exposed to so many things related to healthy lifestyle that I had never even been aware of.Since then, I’ve learned Transcendental Meditation, and before and after surgery I was getting acupuncture several times a week. I’ve changed my diet and use natural skincare products to help my eczema.

I think the big thing about living with a rare invisible illness is that there’s a lot of exploring to do, and figuring out what route to take because we don’t have answers for a lot of [it]. That’s very common with invisible illness, but it doesn’t make it any less frustrating. I became more aware of my body and what it needed. I needed to make me the priority. That was something I had never done before, so it was hard to stand my ground but also recognize the importance of doing this and that there were other jobs out there and that this was not the end-all, be-all. At the time, I thought that if I lost my job, life would be over. But I recognized the importance of having compassion towards others and myself and that I can’t force or convince anyone to have that for me or anyone else.

Your podcast, Made Visible, seems like a form of self-care in itself.

Absolutely, that’s a definite. I started my podcast with a desire to help share other people’s stories about invisible illness with a positive spin. It’s been very therapeutic and there’s a connection between me and my guests, many of whom hadn’t previously shared their story publicly. By building an audience of listeners, whether they have an invisible illness or not, there’s a community being made.

There’s a lot of content out there that I found to be extremely depressing and that didn’t resonate with me. I like to think that I live a “normal” life. I run a business now, spend time with family and friends and travel. I wanted to find people similar to me who are not 100% defined by their health conditions. I have listeners who don’t have a condition themselves or know anyone with one, but they listen because the stories are compelling. 

Having interviewed about fifty people to date, have there been any moments that have really impacted you?

There are several people who have brought up different routes or approaches they’ve taken with their own health that have made me think, “Oh, maybe I should try X, Y or Z.” It’s been really motivating to hear other people’s approaches and how they’re not willing to give up. That’s been a common thread among most of my guests, they’re people who are just continuing to push to find answers and who are not really settling for anything less.

Do you have a particular motto or piece of advice you give others?

Listen to your body. There was a really long period in my life where I didn’t listen to my body where I just pushed on and thought, “I have to do well at work. I have to move forward.” But I’m aware of what my body is telling me and I have to stick to it. I think that’s relevant for anyone, with or without an illness.

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