An Elusive Diagnosis: My Chronic Illness Journey

Illustration by Rebecca Shapiro

My journey with chronic illness is an intense one. Throughout my school, seminary and dating years, I went through all types of treatments and doctors, which put me on an emotional roller coaster filled with grief, frustration, and finally, relief. Eventually, this led me to the realization that I could use my knowledge and experience to help myself and others in overcoming their obstacles and living a healthier and more fulfilling life, but it took a long while to get there.

I first fainted in 3rd grade, after which I began to faint one to two times a year. During 8th grade, I started to notice other strange symptoms, like my left hand swelling up and turning purple. By high school, my symptoms had gotten worse and increased in number, and I began experiencing stomach problems and nausea, which made getting to school in the mornings very difficult. By senior year, I had to stop driving because I was too sick in the mornings and too tired in the evenings to make the 40-minute drive home. I went to see pediatric neurologists, cardiologists, and other specialists; during high school alone, I saw 50.

They started off by telling me I had Vasovagal Syncope, which is a fancy way of saying that I had a tendency to faint. But the clear test results, along with the fact that I looked completely fine on the outside, led the doctors to become skeptical, and the main consensus was that I was healthy but simply an “anxious teenager”. The few doctors who did believe me put me on extreme diets, and when those didn’t help, they would convince me it was my fault or that I wasn’t trying hard enough. It was such an incredibly frustrating time, between the health issues, the skepticism, and the lack of a cause, and it drained me physically, mentally, and emotionally. Thank G-d, I had supportive parents who stood by me every step of the way.

Then came time for seminary. We still had no idea of what was going on, but I was so determined to go. I made it happen, even when I had every reason not to. We knew that sometimes I fainted, and other times I got so sick I couldn’t do much, aside from rest. But we also knew that I had to always remain hydrated and eat a good breakfast, in addition to small meals throughout the day. So that was my game plan.

Overall, I made it through the year successfully. I had my fair share of trips to Terem (Israel’s ER clinic) and a few scares, like when I got rushed to Shaarei Tzedek (a Jerusalem hospital) because a doctor at Terem said I needed my appendix removed ASAP (B”H, that didn’t happen). I’m very lucky to have gone to a seminary with awesome teachers who took care of me and supported me through it all. I had such an amazing year that I somehow convinced my parents to let me return for a second one. I flew back at the end of August. However, by the end of November, things had taken a turn for the worse, and I had to come back to America. I couldn’t make it to classes out of sheer lack of energy, and I developed bronchitis and pneumonia which lasted about a month. It was too much to be so far away from my parents and doctors, so we decided it would be best to come back to Chicago and finally, hopefully, get my health figured out.

I endured hours upon hours of extensive testing, yet just like before, everything kept coming back clear. I remember going to one gastroenterologist who performed a colonoscopy and endoscopy. He was the sweetest doctor. He came into the room so happy to tell me that my results were clear, but I started crying. Not exactly the reaction he was expecting. At that point, I just wanted them to find something already. I knew I wasn’t crazy—there was something wrong! All I wanted was an answer—some validation—that my suffering wasn’t “all in my mind”. Then, I saw my father’s internist. He took my blood pressure and heart rate while I was lying down, sitting, and then standing up. What he noticed from this simple test was life-changing. Within a few minutes, my blood pressure had dropped and my heart rate had spiked. “I think you have a form of autonomic dysfunction called Postural Orthostatic Tachycardia Syndrome,” he said. “You should go to the Mayo Clinic and get checked out.” We were finally onto something—a possible cause and diagnosis. So we went to Rochester, Minnesota, and after a few trips, they were able to confirm the diagnosis: I had POTS.

Oddly enough, it was a bittersweet moment. On the one hand, it felt like the best day of my life because I finally had a name to what had been affecting me all this time, and I felt extremely validated. On the other hand, it was the most terrifying day, because I knew, at that moment, my whole life had been turned upside down. I now had so many questions, and there were so many unknowns.

The Mayo Clinic had also found a rare antibody in my system, so they started to treat me with IVIG, a treatment for autoimmune disorders. I ended up having the extremely rare reaction of meningitis from this treatment, and we had to stop immediately. That is when we found my favorite doctor in Chicago, Dr. Barboi, a POTS specialist. He has been amazing, treating me for about 8 years now, and I’ve gotten to where I am today thanks to him.

Life after diagnosis is just as terrifying and emotionally and physically taxing as pre-diagnosis, and just because there’s a name for it doesn’t mean I am cured. Four years ago, I was diagnosed with epilepsy as well. We believe I’ve had it since 3rd grade, when I started fainting, but we simply didn’t recognize my unique symptoms. Additionally, I had to drop out of college and focus solely on taking care of myself—a decision that was extremely difficult and socially isolating, but thank G-d, I had amazing and supportive friends, rabbis, and family who stuck with me. What helped me get through these challenges the most was my life coach, who also has POTS. This was a huge turning point for me on my journey with chronic illness. I felt so understood, validated, and safe. And it is what led me to my own life’s mission—to help others with chronic illness.

For those of us who are chronically sick, we have so many doctors that help treat us, but we really need emotional support as well. The power of listening is major for someone experiencing any challenge—not just sickness. We need someone who truly understands us and can listen without judgment. Receiving a diagnosis can be so overwhelming, and it forces one to literally re-learn how to live within this new reality. I needed so much emotional support and guidance post-diagnosis. It is easy to feel stuck and wonder, ‘How is it possible to live a fulfilling life with all these challenges? Where do I go from here?’ This is precisely where a coach comes in—especially one who lives with it herself. I strongly believe G-d gives us all challenges for a reason, and what is most important is how we respond to them. I’m dedicated to using my own personal challenge for good, and G-d willing, to help others living with these debilitating illnesses.

Since becoming a coach, I have met and dated my husband, made aliyah, and am now re-adjusting to my new way of life, health system, doctors, and more. The challenges and home sickness that I’m experiencing are all part of this journey, and I’m drawing strength from each moment, using it to advance, better myself, and help others in similar situations. I hope to make a lasting positive impact on all those whom I work with, and draw inspiration from them too. It’s easy to feel invaluable or less-than when you have such a monumental challenge, but that just makes you all the more impressive when you overcome it. If I can assist others in achieving their goals, everything I’ve been through has been worth it.

For anyone who suffers from chronic illness, I want to leave you with some words of chizuk. There is life after illness. You will find the tools you need to get through the bad days. You will learn to adapt in ways you never thought of before. You will discover your true friends and find your cheerleaders. You will have flare-ups, but you will learn that they will go away as fast as they come, even when it feels like forever in the moment. You will become your own best advocate with doctors, and you will learn medical terminology you never thought you would know. You will have difficult times, but also find your strength and realize just how strong you really are. You are a fighter, so keep on fighting.