Living with Rheumatoid Arthritis
by Sara Nash
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.
I sat down and started my own blog, The Single Gal's Guide to Rheumatoid Arthritis. Soon after I wrote my first post, I started to get comments and e-mails from other young women in the same boat. My blog became the virtual equivalent of Field of Dreams: If you blog it, they will come. The immense relief I felt being in touch with others like me was indescribable. Those who found my blog mirrored many of my own questions, fears and doubts back to me, and together we found a community of people who could offer wisdom and support, and often, a much-needed wisecrack.
After corresponding with several other savvy women who also lived in New York, I took the virtual support system offline and established what I jokingly referred to as a Sick Chick Club. Even though most of us couldn't always drink alcohol due to the meds we were on, meeting up for happy hour with other young and independent women further dissolved anxieties about being young and sick. If nothing else, at least we finally knew we were in good company!
Flash forward to two years later. I am now safely on the other side of my 30s, and while I still have to manage countless doctor visits, medications and the ups and downs of an unpredictable illness, I no longer feel isolated or helpless in my struggles. Blogging about my rheumatoid arthritis opened up a whole new world and connected me to strong, resilient people all across the globe who are living with RA and making their lives count. Furthermore, I've been able to help spread awareness about rheumatoid arthritis through my writing, and now as a panelist on the second season of New Way RA, an online talk show hosted by Deborah Norville for people living with rheumatoid arthritis.
My mother is fond of John Lennon's famous quote: "Life is what happens to you when you're busy making other plans." Getting a chronic disease had not been on my road map, and though I felt like my life was ending after my diagnosis, I now realize that there is plenty of hope to be had, but much of it is up to us.
If you find yourself in similar shoes, reach out to those around you, online or off. You can start your own blog or even your own Sick Chick Club to make sure you're connected with others every step of the way. With the help of your doctor, explore how you can make changes in your life to adapt to your new health status, and figure out new ways to reach your goals. Like me, you never know what you may discover. Though I couldn't have imagined that this is where my life would take me, I'm stronger for it, and know that I can meet the challenges in front of me head-on.
Tune into the New Way RA online talk show by clicking here.