As a single, busy woman living in New York City, sick wasn’t a part of my vocabulary when I entered the last year of my 20s. Nonetheless, it soon found its way into my life.
It began with a swollen toe joint, which I easily dismissed as a yoga injury. But when the swelling and pain persisted and began to spread to other parts of my body, I knew something was going wrong. After a series of visits with a primary care physician and a lot of blood work, the test results came back in the “strongly positive” category for rheumatoid arthritis, a chronic autoimmune disease that causes severe pain and swelling in the joints, along with a host of other fun symptoms like unshakable fatigue and fevers. As a lifelong overachiever, it was the one test I hadn’t wanted to score highly on.
The next six months of my life were probably some of the darkest, most painful ones I have known. I was not prepared for the onslaught of doctor and physical therapy appointments that came my way, or at how quickly my physical condition deteriorated. It had never occurred to me that I might have trouble washing my hair and dressing myself at the age of 29. But most of all, I was unprepared for the emotional fallout of finding out I had something incurable at such a young age. I felt like my life had only just begun, and yet, it felt like it was suddenly going to end horribly wrong.
Many of the books and resources I found at the time did nothing to dissuade these feelings of isolation and doom. Words like disabled and disfigured screamed out from every page, along with statistics about my increased chances for cancer and heart disease.
To top it all off, the advice and case studies seemed to be geared toward women twice my age and assumed that I was married. Suggestions like “having your husband help you carry the groceries” didn’t do me a whole lot of good, given that I was single and living on my own. My independence had been a source of pride for me, but it suddenly felt more like a liability. How was I supposed to get through this all by myself? Though my family was a wonderful support system, they lived far away, and when you are used to doing everything on your own, it’s difficult and humbling to ask friends to help with things like cleaning your bathroom or getting dressed.
What’s more, there was scant advice on issues that pertained to being young and single—and sick—such as navigating the dating world with a chronic illness and thinking further down the line to having a baby one day. How was having rheumatoid arthritis going to impact all the future decisions of my life?
That’s when I decided that if I wanted my story to be out there, and more importantly, if I wanted to find other young women who were facing the same tough reality about their health, I would have to do it myself.