After spending four years in New York City living with roommates, moving into my own place felt like sweet relief: I was finally independent- really, truly independent. I couldn’t wait to relish the simple joy of coming home after a long, crazy day to a space that would be exactly the same as I’d left it that morning. The only dishes in the sink would be mine, and I could have everything just the way I wanted it. To me, it seemed like heaven.
Unfortunately, I didn’t get to enjoy my version of heaven too long before rheumatoid arthritis came knocking on my door. In fact, my symptoms began only a few weeks after I’d moved into my studio apartment- talk about an unwelcome houseguest. I hadn’t even settled in completely when this lousy disease flounced in and made itself at home in the middle of my joints. Even worse, there was no way to evict it.
As most anyone who’s ever even had a bad cold or the flu knows, being sick and being by yourself really sucks. There is no one to make you tea or dinner or fetch you an extra blanket. If you need something, it’s up to you. I discovered quickly that life with an illness like rheumatoid arthritis made my hard won independence feel like a burden, not a blessing.
Before my meds kicked in, the range of motion in both of my arms was severely restricted since the joints in my collarbones and shoulders were all aflame. Raising my arms straight up above my waist was incredibly painful, not to mention doing any fancy movement that might involve putting my hands behind my back. This might be easy to work around if you are a guy, but trust me; putting on a bra every morning was no small feat. Neither was zipping up a dress or washing my hair. These are some of the things the doctors don’t warn you about when you get diagnosed with RA.
Day-to-day tasks like opening a jar or a bottle of water, brushing my teeth, and even washing dishes were suddenly acts of pure torture. I took to using pliers in the kitchen to help me open anything that twisted and even used them to help pull up zippers when I dressed. Knowing how much I love to bake, my parents bought me a Kitchenaid mixer so that I wouldn’t have to suffer with a hand-held mixer if I wanted to whip up a cake- not that I was whipping up much of anything other than a nice shot of Enbrel.
Cleaning my apartment took a major back seat. Who cared if the shower had been properly scrubbed when you couldn’t even turn your head from side-to-side? I didn’t, but I couldn’t escape some basic housekeeping chores like taking out the trash and buying groceries. Sadly, pliers weren’t any help at all with either of those tasks, so I bought a wheely cart. That helped some. On the plus side, since I only had to buy groceries for one, there wasn’t usually too much to carry. I took a cab when I needed the extra help, and on days when I just couldn’t manage to feed myself after pushing through a day of work, I had the benefit of access to just about every type of food delivery given that I lived in the middle of New York City. I could also get my laundry delivered . . . and I did.
Not having anyone around on a day-to-day basis had its drawbacks emotionally as well. Not only was there no one around to help pitch in with tasks, but there was also no one around for company. Of course I had great friends and a wonderful family who did as much as they could, but they lived far away and my friends had their own lives to tend to. While their help and support meant a lot to me, I came to realize that at the end of the day, no one else could have rheumatoid arthritis for me. I was on my own in a way I hadn’t imagined I’d ever be, and I was going to have to learn what that meant.
Slowly, and by necessity, I began to adapt, after all, there was still an up side to living on my own, even with an illness. I didn’t feel self-conscious about spending twelve hours –or more- in bed on the days when I was severely fatigued. I didn’t have to share the couch with anyone or feel that I was in anyone’s way. I didn’t have to worry about taking care of any one else’s needs. I had the rare gift of true privacy in a city crammed full of people, a refuge where I could nurse and replenish myself.
Living on my own while dealing with a life-changing diagnosis shaped how I thought about my disease and myself, and even though it had its disadvantages, it helped make me stronger. It forced me to be a little inventive and to pick myself up emotionally. It also taught me what it really means to be independent; when it really matters, I can rely on myself.
Sara is the author of the blog The Single Gal's Guide to Rheumatoid Arthritis.