My Mystery Illness

I recently watched a video by a musician with an undiagnosed “mystery” illness. Despite being severely disabled, she sings beautifully from her bed about her journey. Next, the video moves into shots of other people, disabled by similarly undiagnosed symptoms, also in their beds. Each holds a sign reading “Believe Me.”

This video was especially impactful for me, as for the past 18 years, I, too, have lived with a mystery illness. I don’t consciously think of myself as disabled; yet as art can often do, this video caused me to reframe my experience.

At the onset of my condition, I had a variety of symptoms: swelling of my hands and feet, sensitivity to heat, stiffness, water retention, digestive disturbances, nerve-related itching, and prickling sensations. I took every test possible: blood, urine, tissue, fecal, saliva. I tested negative for everything. 

I was misdiagnosed by an irresponsible doctor, who wanted a specialist to use me as an educational research study. That misdiagnosis caused me to lose my insurance, requiring me to see yet another specialist to get “undiagnosed” in order to regain medical insurance several years later. 

After this, I stopped seeing doctors for a long time. Instead, I discovered high-maintenance dietary and cleansing practices. These helped a great deal to get me back on my feet, but did not eradicate my symptoms.

A few years into my health issues, I began hiding my condition as much as I could. Due to its undiagnosed and "mystery” status, I had experienced various forms of dismissal and judgment, feeling devalued for having an illness, and judged for being unbelievable. People categorized me as neurotic, having eating disorders (due to my dietary choices), selfishly non-compliant, difficult, and weird. 

Still, I decided to survive and live my life. 

In many ways I have not only survived, but thrived. Yet my health has been responsible for great losses in my life—including a career and a marriage—and I still contend with it every day.

My life is large in some ways, yet at the same time I seem to exist between very small margins. Determined to maintain my “keep going” attitude, I’ve remained open to the possibility that perhaps a future medical discovery might help me. And after years of avoiding doctors altogether, I’ve become more open to trying new treatments from time to time. All these efforts are self-motivated and occasionally facilitated by a willing health professional. (A gastroenterologist once told me, “Michelle, us doctors know about one percent.” It was an honest admission, and one that I take to heart.)

After much research, I now believe that my mystery illness is chronic vein disease, an inflammatory dysfunction of the circulatory system. I still don’t know what might have caused it. And if I could, I would rid myself of my condition in a heartbeat. Yet despite the losses, my health journey has made me grow in many ways. I have learned much about myself and others, and about fear, trust, isolation, protection, and hope. Living with a mystery illness has taught me how to navigate the dicey territory of survival with grace, love and boundaries.

I don’t know what the future holds, but watching the courageous musician in that video, I am reminded again of the power of community and connection. As physical beings, each of us will eventually struggle with some ailment. And it’s then that community and connection will help us on our own journeys.