Harper Spero has been diagnosed with Hyper IgE/Job's Syndrome since she was 10, but at 26, she faced a debilitating and urgent condition she struggled to find answers for. Although she has yet to have all of her questions answered, her perseverance and faith in both western and eastern medicine has taught her the importance of being her own advocate as she lives with her chronic illness.
Harper’s story is part of Rupa Health’s Be Your Own Healthcare Advocate series, where we share the stories of patients who take their health issues and wellbeing into their own hands.
What do you do for work?
I am a Business Coach and Consultant, and the host of the Made Visible Podcast.
What health issues were you experiencing?
When I was 26, I would walk down two streets in Manhattan and get out of breath. I couldn't get up the two flights of stairs without collapsing on my couch as I walked into my apartment. I went to my general practitioner, who told me I had pneumonia and bronchitis. She gave me antibiotics and inhalers and sent me on my way. I knew something wasn't right.
How did you go about finding a solution? How many doctors/experts did you see during this time period? Tell us about your journey.
After 3+ months, my mom suggested I see a Pulmonologist. I fell in love with the doctor at NYU immediately, who suggested I do a slew of tests to get some answers. What came of that was a cyst the size of a golf ball in my right lung. She said it needed to be removed immediately.
The backstory to this is that I had been diagnosed with a rare immune deficiency (Hyper IgE/Job's Syndrome) when I was 10. All the symptoms I experienced until that point were mainly skin related and manageable. Given my condition, it seemed important to check with my immunologist who had diagnosed me with this condition about undergoing surgery. She highly discouraged me from it and insisted I wouldn't survive the surgery. That's when I was really stumped on what to do. She suggested I contact the infectious disease team at the National Institutes of Health (NIH) who had been studying my condition for years. Although I knew of them years prior, I chose not to see them earlier in my life because I never wanted to be a research project--I wanted to live my life.
Typically, they don't get new patients in for months or years, but they saw me overnight given the severity of the situation. They suggested I have the surgery even with all the potential horrible outcomes. It was terrifying but I trusted them and my NYU doctor.
On March 5, 2012, I had a lobectomy (removal of 1/4 of my right lung) at NYU. Seven years later, I can't imagine my life without my doctor at NYU or my team at the NIH. They've done a phenomenal job at connecting with each other to support me as well.
How long did you struggle before either getting a diagnosis or starting to feel better?
My mom spent the first ten years of my life trying to figure out what was wrong with my health. She knew something wasn't right because I was dealing with so many skin infections, ear infections, more colds and allergies than your average kid. At 10, she finally discovered an immunologist who diagnosed me with Hyper IgE/Job's Syndrome.
Tell us about your lowest point. What happened, how did you deal with it?
Being told I needed surgery by one doctor and that I'd die in surgery by another was terrifying. I felt so stuck and didn't know if surgery would kill me or save me. I'm an expert in my body but not an expert at treatments! I had the support of my parents, family and best friends to navigate making these decisions and trusting my gut.
What was the most frustrating part of your journey?
Doctors lack of bedside manner. It amazes me how many doctors and nurses do not know how to handle patients especially when it comes to delivering news.
What was a high moment or a turning point in your journey?
My health having such an impact on my life led me to start Made Visible podcast in July 2018. I realized there was nobody owning the invisible illness podcast space and it was important to have candid conversations with patients, caregivers, doctors and practitioners about invisible illness. There are so many people silently struggling and my goal is to make people feel less alone.
How has this experience impacted or shaped your life today?
I am a completely different person than I was pre-surgery. I worked in beauty PR at that time and realized that as much as I love beauty, personally, I needed to work in something a lot more fulfilling and meaningful.
I am more intentional with my time and who I spend it with. I require a lot more me time than I did pre-surgery.
What motivated you to keep going in search of answers? What made you determined to find a solution?
It was life or death--I didn't see giving up as an option.
How did holistic or integrative care shape your journey?
For many months before and after surgery, I had acupuncture at least once a week. It helped with opening up my lungs, managing my stress and helping me sleep.
How are you doing today?
Most of the time, I feel fine, but have weird symptoms that come up. The crazy thing about invisible illness is that I seem and look fine but sometimes feel horrible or something odd is going on in my body.
I recently took myself to the ER because I was coughing up blood. I was admitted to the hospital for three days feeling 100% fine aside from the cough, and nobody figured out what happened.
I've been getting blood-work at least once a month for the last seven years since surgery. I'm pretty well-known in the NYU lab. A few years ago, my liver function was extremely elevated. At the same time, my legs were swelling out of nowhere every few days or weeks over a few months. I had many tests, saw many doctors, was admitted to the hospital at the NIH and still have no answers as to if they were related or what happened.
What advice do you have for someone that's trying to figure out their own health concerns?
Don't stop! Keep exploring! Nobody is going to advocate for you in a way that you can advocate for yourself. Listen to podcasts like mine, read articles and try different modalities--eastern and western. You never know who or what you're going to find that can help you.
What does it mean to you to "be your own health advocate"?
If you sit back and accept what is suggested, your life and health could be at risk. It's imperative to ask questions and not accept no for an answer. If you don't advocate for yourself, nobody is going to do it for you.
Harper’s journey led her to now host her podcast, Made Visible, which has been featured by the NIH Record, the New York Post, and more. She strives to help those with invisible illnesses be heard and feel less alone, and also works to raise awareness in the community about the issue.