Episode #115: Harper Spero
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More than 100+ episodes in and I decided it was time to do a deep-dive into my own health story beginning with what was an arduous, confusing, and exhausting experience that led to my Hyper IgE Syndrome diagnosis at ten years old.
I spent almost three decades with a rare immunodeficiency, feeling so ashamed and uncomfortable in my skin that it seemed better to hide than disclose what I was going through. It wasn’t until I was 27 and underwent a life-altering surgery that it was nearly impossible to hide anymore.
This episode includes what it took to get a diagnosis in 1995 and how little information they had about my condition at the time and discovering my team at the National Institutes of Health (NIH) who are the most educated people in the world about my condition. You’ll hear more about all of the mysterious symptoms I’ve experienced over the years that no doctor knew what to do with.
It took a major surgery for me to start sharing my story and ultimately led to launching Made Visible, realizing the benefits of sharing my story and so many others living with or affected by invisible illness. Once I started sharing my story I realized how much it could empower others to share their stories.
“When I made it through surgery and started talking and writing about my experience, I began scouring the internet for like-minded people and stories. I couldn’t find anything. That’s when Made Visible was born.”
Reasons to Listen:
The long path it took to receive a diagnosis of my rare primary immunodeficiency, Hyper IgE Syndrome
Listen to the story of how my surgery to remove a cyst in my lung at 27 was a turning point in my life and health journey
Learn how different doctors were providing conflicting advice for how to proceed with my surgery
“Owning my identity as someone with a rare immunodeficiency and invisible illness was not something I did for a really long time.”
About Harper Spero:
Harper Spero is a storyteller, community builder, podcast host and business coach. During a fast-paced career in marketing, PR, and event production spanning the beauty, music, and tech industries, Harper’s life came to a halt with a life-altering surgery due to her rare immunodeficiency, Hyper IgE Syndrome. After living quietly with her invisible illness for nearly three decades, Harper’s surgery was the straw that broke her silence, leading to the creation of the Made Visible podcast, sharing her writing with the world, and business coaching and consulting. Her work has been featured in Health Magazine, Forbes, Well+Good, and more, and aims to uplift the voices of those living with invisible illnesses. Harper works with companies to create more inclusive work environments for people living with invisible illnesses. Through storytelling and community-building, she enhances the employee experience and allows those who are not affected to become more educated, informed and compassionate. Harper is on the Board of Trustees for the Immune Deficiency Foundation (IDF). She’s originally from New York City, and currently lives in Tel Aviv.
Instagram: @harper_spero
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Hey guys, welcome to another episode of Made Visible. I’m your host Harper Spero and I’m so glad you tuned in.
We’re doing things a little differently today as this is my first solo episode. Someone recently asked me to share the episode featuring MY story and I realized that I really didn’t have one that focuses solely on me. I do share bits and pieces of my story in the episodes featuring my parents; you can go back and listen to episode #27 where I interviewed my mom and episode #100 where my dad interviewed me.
If you want more solo episodes please DM me on Instagram at madevisiblestories or email me at hello@madevisiblestories.com and tell me what you want to hear more about. I’d love to hear from you and I’m happy to record more solo episodes if you like them!
So, here we go…
Back in 2011, I was running the digital department at a beauty PR firm. I was only a few months into the job where I’d created a role for myself and started building a team. I was working with high-level clients and making more money than I’d ever made before. But also…I was the most stressed and overwhelmed I’d ever been in my career. I’d be responding to emails at midnight on weekends and spend hours upon hours tweaking the littlest details of proposals for potential clients. This was a time in my life where perfectionism showed up the most and I worked at a company and in an industry where it was a requirement.
As a native New Yorker, walking long-distances came really easily to me and was really enjoyable for me. I’d often forego the subway, taxis or buses and choose to use my own two feet to get places. But there came a time several months into this job where after walking two blocks, I’d have to stop and lean against a building to catch my breath. I felt like if I walked another step, let alone another block, I’d collapse. I was living in an old west village apartment at the time and while there was an elevator, I often chose to walk the two flights up to my apartment. But that came to a halt when I physically couldn’t do it anymore. I’d get inside my apartment, collapse on my couch and try to control my breath. I’d never experienced anything like it. I told friends and family that it felt like I had smoked a full pack of cigarettes that day and my lungs were really angry at me…but let’s be clear, I was NOT a smoker.
I went to my general practitioner who listened to my lungs and didn’t seem concerned. She prescribed me some antibiotics and an inhaler and sent me on my way. Weeks later when nothing changed, I called her office and they offered me a different inhaler. Again, nothing changed. I still couldn’t walk my city as I was used to. A few months in and no changes, my mom suggested I see a pulmonologist because it was clear something was going on and it wasn’t improving. I had blood work, an x-ray and a CT scan. The x-ray and blood results came back while still sitting in her office. I will forever have the visual in my head of my mom standing up and hugging me with tears in her eyes of relief when the doctor said everything was clear on those two tests. But I was certain something was wrong. Those tests weren’t giving us an accurate picture.
The next day my pulmonologist called me. It was a Saturday and I was taking my time in the morning at home.
“Are your parents with you?” she asked.
“No, they’re at the gym,” I responded. We didn’t live together but I knew their routine.
“Are you sitting down?” she asked.
This didn’t sound good.
She continued to tell me that the CT scan showed a cyst the size of a golf ball in my right lung. She insisted that I needed surgery immediately. If she continued talking, I didn’t hear it because I blacked out. I don’t even remember when I hung up. I do remember calling my parents multiple times until I got through to them and between sobs trying to get the words out but not even being able to tell them the full picture because I didn’t know what was happening. They called the doctor directly, right after to gather all the information.
I was 27 at the time and it was my first CT scan since I was 11 years old and hospitalized for pneumonia. We have no idea how long that cyst was living in my lungs for. But my doctor was certain I needed to have it removed.
But here’s the thing. We need to backtrack a bit because ever since I was a baby I presented with many infections and skin infections. I got sick often. I had boils, cysts, fungal infections, ear infections, warts – all these really lovely issues that no kid wants to be living with. My mom took me to every doctor, specialist, healer, practitioner there was to see in New York City trying to get to the root of the problem. Nobody knew what to do with me. I tried different diets, supplements, herbs, medications and nothing worked. I was observed by medical students in my dermatologist's office and felt like a guinea pig. I had a box of tissues thrown at me by an eye doctor when I had conjunctivitis. I went gluten-free before gluten-free was a thing. I ate leafy greens before they were the healthy trendy thing to eat. I saw kinesiologists, acupuncturists, reflexologists, healers, functional medicine doctors and put every ointment, cream, and essential oil on my skin.
But then somehow, when I was 10, we ended up at an immunologist’s office who did a blood test and pretty much immediately informed me that I had hyper IgE syndrome, or Job’s syndrome. If you listen to the episode with my mom, you know that while it was great to have a diagnosis, we still didn’t have much information about how to treat my symptoms. We learned the name for my disease, and the fact that it’s a rare, primary immunodeficiency, but not much else as there wasn’t much information out there at the time about hyper IgE syndrome. For reference Hyper IgE syndrome is characterized by eczema, recurrent staph skin infections, recurrent lung infections and high serum levels of IgE.
The immunologist put me on a prophylactic medication, which aimed to keep pneumonia and other bacterial infections out of my body. She also suggested I see a doctor at the NIH, the National Institutes of Health, in Bethesda, Maryland as he was the most educated doctor in the world about my condition. But I learned it was a research hospital and I was done being a guinea pig. I’d been in and out of doctor’s offices for as long as I could remember. I decided, now that we had a name for what I was dealing with, I’d continue living my life as normally as possible – putting bandaids on my symptoms and my emotions.
So, flash forward back to the moment when I get the call from my pulmonologist telling me I need surgery. While I loved and trusted this pulmonologist, she wasn’t an expert in Hyper IgE syndrome, so it felt important to check in with the immunologist who diagnosed me 17 years earlier. When I called her, after years of not seeing her because my health was really under control for so long, her immediate reaction was that I wouldn’t survive the surgery.
She felt it was too risky to undergo.
As if I didn’t already want to throw my phone out the window and dig myself into a hole from the pulmonologist's call earlier in the day – this moment really had me over the edge.
Again, I blacked out a bit. I was getting dueling information from reliable sources, one being the expert in my condition while the other was an expert in lung conditions. The immunologist again advised me to go down to the NIH, where the infectious disease team was the most knowledgeable in my condition. I grew to learn that they treated over 100 patients with my extremely rare condition. I finally had to let go of my fear of being a guinea pig as they knew what they were doing there.
Again, a lot of these details are a bit blurry because it was such a traumatic time but somehow we got into the NIH within 24 hours. We had been told it could take a year to go through the process of becoming a patient. Looking back, I am so grateful they saw me as quickly as they did and yet, clearly at the time, it showed how urgent it was to be seen and make a decision. I walked into the NIH so fearful and skeptical. I’d been observed by medical researchers and students enough to know that wasn’t an enjoyable experience and I felt like a lab rat. And who wants to be a lab rat?
But once I got there and met with the doctors, I quickly learned that I was treated more like a person with feelings than ever before. I felt nurtured and cared for immediately. While the doctors warned me of the potential dangers of surgery and the issues past patients with my condition had – they also felt it was the only way to go. They didn’t feel it was smart or safe for me to continue to live with this cyst in my lung – not knowing how rapidly it would grow and how much more it could impair my breathing.
While I walked out of the hospital terrified of surgery, I also knew we had made the right decision to go ahead with it. I was in the right hands and needed to do this. I hadn’t listened to my body ever before – never listened to its signs or what was best for it. But I could no longer live that way. I had to prioritize my health for the first time ever.
Now, keep in mind, because I was so ashamed of my rare immunodeficiency, I didn’t talk about it with anyone other than my mom and doctors. I was the girl wearing long-sleeves in the summer to hide my eczema covered arms and chest. I’d write in my journal praying it would rain for a field trip so I wouldn’t have to be seen in a bathing suit and expose my skin. I’d covered my face in globs of makeup trying to disguise the skin I was in. I hated the body I had and didn’t want anyone to see it.
My best friends, my extended family didn’t know anything. And suddenly I was about to have surgery that would keep me in the hospital for a week and on medical leave for a few months. There was no more hiding. There was no more pretending. I had to disclose what I was going through.
When I started telling friends and family, they didn’t judge me – more so they felt bad that I had been living with this alone for so long. I had chosen to silently suffer. And while I lived a very full life – in retrospect, I spent a lot of time and energy suppressing emotions, I truly didn’t allow myself to process or think about any of the challenges I was going through with my health, let alone the stressful and exhausting doctors appointments, misdiagnoses, and lack of care.
If I knew of the resources back then that exist now, I am quite sure that I would have been resistant to them. On episode #45, I spoke with Sarah Harris who talked about her experience going to skin camp – I had tears in my eyes as she told me about it, knowing how valuable it would have been for me as a kid. And yet, I know if it was offered to me – I wouldn’t have gone. I didn’t identify as someone who belonged in therapy or a support group or who would benefit from connecting with others living with similar conditions. I was in complete denial in hopes that it would fade away and I’d keep progressing in my life.
But that was completely unrealistic when it came to the status of my lungs in 2012. There was no more hiding.
And so, on March 5th, 2012, I had a lobectomy. A surgery to remove ¼ of my right lung. And while it was a terrifying period of my life, the surgery went well and the doctors and surgeon were really pleased with the outcome. What they removed from my lung was a cyst caused by aspergillus, which is a form of mold. To this day we don’t know how or when it got in there – maybe from my old west village apartment, who knows.
I refer to my life as “before surgery” and “after surgery” as so much of my life changed. I was on medical leave from work for months, and when I went back to work full time, I quickly realized my body couldn’t handle it. I wasn’t fully recovered, I wasn’t the same person I’d been before surgery. I ended up having to ask to go part time—which was really hard for me to advocate for myself but I physically was unable to be there the kind of hours I had been working pre-surgery. While my boss had been quite understanding and respectful of my needs prior to surgery, she quickly became a bit less compassionate. While I prioritized my health instead of work for the first time in my life, she was fully focused on her business and frustrated by my health and needs. In retrospect I totally understand her perspective yet was very clear that we were no longer aligned and I needed to get out of there.
Fortunately I was able to find a job that allowed me and encouraged me to prioritize my mental and physical health in a way that I’d never experienced before. I was more aware of what I was eating, stopped drinking, started practicing yoga regularly, learned transcendental meditation and created boundaries for myself where I had never considered boundaries before. While my body was constantly changing, I was much more attuned to what it needed and chose to listen to it instead of ignoring the signs. I knew this job would be my last job before I started a business, without even knowing what the business was. It was a place where I felt safe, supported and I could be myself and didn’t get burnt out from the workload. I was producing events and doing marketing for nonprofits and health and wellness brands whose missions I was inspired by.
Over the last 11 years since my surgery, I’ve been learning more about my body. What its boundaries and limitations are. When I want to and can push my boundaries and when I need to listen to my body and trust it’s giving me signs. I’ve had random symptoms come up over the years where I’ve gone to multiple reliable doctors and nobody knows what to do with me. I’ve ended up in the hospital for days feeling fine but tests show otherwise and years later, we still don’t know why. I’m used to being told I’m rare, unique, and doctors have never seen medical records like mine.
Since surgery in 2012, I’ve been on anti-fungal medication to maintain the aspergillus that remains in my lungs. Our goal is to avoid it spreading and making it harder for me to breathe as I don’t want to have further surgeries – so far so good on that front. I walk over 10,000 steps on most days and while walking uphill and stairs are challenging – I don’t let it stop me. I’ve gotten in a rhythm of practicing yoga several times a week and eating healthy-ish but my addiction to pasta and cheese can’t be stopped. I go to acupuncture weekly, irregularly practice meditation, and aim to listen to my body as much as possible.
Each year I’ve celebrated my surgeryaversary – a day I am so grateful to be alive. The first surgeryaversary my closest friends and family had a really special dinner at my parents home. Last year, my tenth surgeryaversary was shortly after I moved to Tel Aviv, and I had a dinner with a group of girlfriends. It was one of the most memorable nights I’d had in a long time. This year I got a massage and had a really nice lunch then dinner with a friend. It was a reminder especially years into the pandemic, of the importance of celebrating life moments – big and small. To me it feels important to acknowledge how far I’ve come since 2012 and what my body has been through.
Once I started acknowledging my invisible illness, I started to connect with others. I've met so many people over the years living with invisible illness – many of whom have conditions that are NOT similar to mine but we can connect on similar circumstances, emotions and challenges. I remember when I first went to the Immune Deficiency Foundation Conference in 2013 and it was a bit too shocking for me. I didn’t feel like I belonged at first. I felt completely out of place and not ready to own the fact that I had a primary immunodeficiency and was more like these people than I expected. Years later as I grew into myself and realized the value I could provide and gain from the IDF, I got more involved. I co-chaired the first New York City walk for Primary Immunodeficiency, have talked on panels, and last year I joined the board of trustees for the Immune Deficiency Foundation. Our goal is to improve the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency through fostering a community empowered by advocacy, education, and research.
Becoming an entrepreneur in 2014 allowed me the flexibility to balance work and life however was best for me and I couldn’t be more grateful for that. Is it easy all the time? Absolutely not. But I have the freedom to decide how I spend my days. Sometimes that’s in bed or taking it easy and not doing much at home, and sometimes that’s back to back client calls, podcast recordings, running errands, seeing friends. I try to find a balance with it all and there’s always room for improvement.
Having an amazing medical team has been so important to managing my condition. Since my surgery in 2012, I have gone to the NIH at least once a year and remain part of medical research studies. My team there is incredible and they’re truly dedicated to patients like me with Hyper IgE syndrome and helping to improve our quality of life.
Since winter 2021, I’ve had Israeli citizenship and have been living in Tel Aviv. I’ve spent several months at a time here before 2021 but I always returned back to the U.S. and never saw doctors in Israel.When I moved here in 2021, I was incredibly fortunate to be connected with an immunologist, thanks to the Facebook group for people living with hyper IgE. I truly don’t think I could live here if it weren’t for this immunologist. He already knew my doctor at the NIH very well so they work collaboratively with decisions about my health. Navigating socialized medicine is definitely challenging when I don’t speak Hebrew but I’ve found my way and am incredibly grateful for the support I’ve received since living here. There are many, many benefits to socialized medicine when you don’t get bogged down by the bureaucracy….which can be challenging. I was in New York for a week in December and felt like my body completely went into shock with the cold – I’m much better in drier climates. I’m an eight minute walk to the beach in the middle of a city and certainly don’t take that for granted.
As I said before, owning my identity as someone with a rare immunodeficiency and invisible illness was not something I did for a really long time. But when I made it through the surgery, and started talking and writing about my experience – I began scouring the internet for like-minded people and stories. I wanted to read and listen to people who had invisible illnesses but weren’t letting their health define them. I couldn’t find anything.
That’s when Made Visible was born. I wanted to share stories of people living with invisible illnesses and those that love and support them. And that’s exactly what we’ve been doing here. Also, in late 2020, I recognized how valuable writing had been for my own processing of my health and the value I could provide to others. I started facilitating the Made Visible Writing Class which has been incredibly rewarding to help people living with invisible illnesses write and share their stories and connect with others who understand what they are going through. I’ve continued to facilitate those classes for students, as well as offer a monthly session where you can drop in and write and there’s no commitment. You do not have to have writing experience in order to attend.
And thanks to a friend’s suggestion and connection last year, I started to work with companies to create more inclusive work environments for people living with invisible illnesses. Through storytelling and community-building, I enhance the employee experience and allow those who are not affected to become more educated, informed and compassionate.
So, that’s my story in as much of a nutshell as I can provide. I am always happy to answer additional questions or share more if there are topics you want to learn more about. I share this all as your host, not as a medical expert or someone suggesting my way of living life being the way to go.
As I said at the beginning, feel free to email hello@madevisiblestories.com or DM me on Instagram at @madevisiblestories if you have any suggestions, questions or ideas. If you’re interested in the Made Visible Writing Class, head to madevisiblestories.com to sign up. Thanks for listening and see you next week!