We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from Michael Bihovsky.
I have been experiencing severe physical symptoms for the past decade, since I was 16. These symptoms were only recently diagnosed as Ehlers-Danlos Syndrome, bordering the hypermobility and classical types. Over the years, my symptoms have come to match a relatively “textbook” understanding of connective tissue disorders. In earlier stages, however, my chronic global pain was largely dismissed and my extreme hypermobility was deemed an irrelevance. I arrived at my EDS diagnosis through my own research, and then had my diagnosis confirmed by every subsequent medical expert.
Since then, I have worked to educate physicians and patients alike about the surprising prevalence and effects of this specific disorder, and about the broader psychological implications of any chronic disease.
I have done this largely through the use of musical theater, where I have written and produced musical plays and one short film featuring the stories of people with various “invisible” conditions. My most successful piece, “One Grain More”, is a musical parody that uses humor as a means to give sufferers of food allergies a chance to laugh at their own painful restrictions.
Over the years I have developed and employed a variety of such coping mechanisms, mostly focusing around a philosophy I call, “Live Because.”
“Live Because” is in contrast to what I’ve termed “Live Despite,” which is the idea that people can live rich, full lives in spite of their physical or emotional barriers. “Live Because” takes this a step further by suggesting that in many cases, patients can live a more fulfilling life with their illness than they could ever have done without it.
Ehlers-Danlos syndrome has transformed me from a frequently petty and self-absorbed person into the person I am today (still somewhat self-absorbed, but a lot less petty, and with a clearly defined purpose of alleviating whatever suffering I can). I am better because of my illness, and not just in spite of it.
But this process was, and still is, a journey. Chronic illness is nearly always accompanied by depression, and the need to constantly remain one step ahead of my illness has left me fearful and exhausted. I could never go through this alone. Every person who supported me, and every doctor who believed me and encouraged my quest for answers helped me immeasurably along the way. Perhaps my greatest gratitude is to the remarkable organization Friends In Deed, a pragmatic crisis center in New York City for people with serious illnesses.
A part of me will always be angry; such is the process of mourning the pieces of oneself that are lost to chronic disease. I have learned to accept the duality of being bitter and at peace; ignorant and enlightened. The best physicians have been the ones who guided me along this mourning process, while still laying a foundation of hope for the possibility that I can still realize my personal dreams and ambitions, even if not in the exact ways I had expected.
Michael Bihovsky is a musical theater composer and performer, and an “invisible illness” advocate. He is best known for his viral YouTube video “One Grain More,” a musical parody of Les Miserables about the plight of the food allergy community. Michael has also written an original musical, “Fresh!,” which tells the semi-autobiographical story of a group of college freshmen overcoming physical and emotional adversity amidst the craziness of college, and he is currently writing a book titled “Live Because: The Philosophy of the Broken, and the Journey Toward Wholeness.”