My Journey to Coaching
Updated: Jul 30, 2019
My journey to becoming a chronic illness coach is an interesting and ongoing one, but I’ll keep it brief for you. Throughout my school, seminary and dating years, i went through all types of treatments and doctors that put me on an emotional roller coaster filled with grief, frustration, and finally, relief. 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.
I first fainted in 3rd grade, after which I began to faint one to two times a year. During 8th grade, other strange symptoms started to occur, like my left hand swelling up and turning purple. By high school, my symptoms got worse and increased in number, 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 evening 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 that I had Vasovagal Syncope, which is a fancy way of saying that I had a tendency to faint. But the clear test results and me looking completely healthy on the outside led the doctors to become skeptical and the main consensus was that I was simply healthy but 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, it drained me physically, mentally and emotionally. Thank Gd 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 did know 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 took 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 in the room so happy to tell me my results were clear and 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, that there was something wrong, and 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 dropped and my heart rate 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 was affecting me and I felt extremely validated. On the other hand, it was the most terrifying day because I knew, at that moment, that my whole life had been turned upside down. I now had so many questions, and so many unknowns. The Mayo Clinic also found a rare antibody in my system so they started to treat me with IVIG, which treats autoimmune disorders. I ended up getting the extremely rare reaction of meningitis from this treatment and we stopped that 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 a roller coaster as pre-diagnosis, emotionally and physically and just because there’s a name, doesn’t mean that 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 have amazing and supportive friends, rabbis, and family who stuck with me during that time. What helped me get through these challenges 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. That is what led me to make this my 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 huge for someone experiencing any challenge- not just sickness. Someone who truly understands us and can listen without judgment. Receiving a diagnosis can be so overwhelming and forces one to literally re-learn how to live with this new reality. I needed so much emotional support and guidance as to how to live 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?” That 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 ready to use my own personal challenge for good, and G-d Willing, help others living with these debilitating illnesses. As a coach, we will partner to create a toolbox for you, to get through the day and the future while dealing with debilitating symptoms and/or insensitive family and friends.
My journey has yet to stop. Since getting my certification, I met and dated my husband (a story all on it’s own), 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 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 could assist others in achieving their goals, everything I’ve been through has been worth it. And that is what being a chronic illness coach is all about.
For anyone reading this who has 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 realize your strength and see just how strong you are. You will discover your true friends and find your cheerleaders. You will have flare ups and you will learn that they will go away as fast as they came, even when it feels like forever. You will adjust the best that you can to this rollercoaster called life with chronic illness. You will become your own best advocate with doctors and you will learn medial terminology you never thought you would know. You will have difficult times and realize just how strong you are when you come out of it. You are a fighter, so keep on fighting.