Chronic Illness in The City
It’s hard to be in the city that never sleeps, when all you want to do is crawl into bed.
I am, quite possibly, the picture of a Midwestern girl. I grew up in a suburb of Detroit, where the weekends meant shopping at the mall, having girls lunches, and general down time. But in New York, there’s no down time, no rest for the weary, and certainly no rest for a 30-year-old with rheumatoid arthritis and lupus.
New York is sexy. The city is sexy. The lights of Broadway are spellbinding. Sometimes I have to pinch myself – do I really live here? Did I really make it here? Well, if I can make it here, then I can certainly make it anywhere, because having a chronic illness and living in New York is the opposite of sexy.
It’s exhausting. It’s a grind. Working a 9-to-5 job, I am exhausted at the end of the day. I come home, eat dinner, and crash. The fatigue is killing my sex life with my boyfriend, and it’s killing our social life, too. I can barely function enough to get out the house on the weekends, let alone during the week after work.
Breaking New York Rules
In New York City, you accept every invitation you receive, and you treat every outing and event like it’s the best thing you’ve ever been to. It’s taken me a long time to get to the point where I am actually able to say no to things that I know will zap my energy and aren’t worth it.
And this just isn’t acceptable in New York. I’ve had people call, email, and generally hound me when I say no to an event. And it’s hard to explain because as obsessed as they are with my absence, they are equally not obsessed with understanding anything whatsoever about my health situation. I am not one to force that information down someone’s throat. So for me, it’s easier to say I’m busy than try to explain why, unlike every other 30-year-old living in New York City, I have to pick my commitments wisely, and I can’t be scheduled every minute of every day of my life. It exhausts me and then that prevents me from doing the things that I really have to get done.
I guess I will just have to accept the fact that I am a breaker of the social etiquette rules of New York. So while the typical 30-something lifestyle in New York is all about hobnobbing, this 30-year-old’s life is all about taking naps, icepacks and Biofreeze.
From Heels to Flats
And let’s talk about heels – a quintessential staple for the on-the-go New York woman. Heels make you feel feminine and powerful. I’ve learned to embrace the flat and that’s not cool in New York City, either. I own heels, beautiful, sumptuous heels that would make any girl jealous, but I can’t wear them. Not just because I would probably fall down the subway steps and kill myself - which almost happened once already - but because they’re not practical. Whenever I wear heels, my feet hurt so much. The heels remain in my closest, though, beacons of promise and hope that someday I will be able to wear them again.
Go-Go-Go No More
I was pretty much a go-go-go person before I came to New York, but upon arriving, I realized this was a whole new ball game. My definition of “go” is different than the definition in the city.
People here will knock you on your butt before they will help you up off the ground. And that’s hard if you have days where you move slower than usual. Navigating the subway stairs might as well be a physical therapy session for me, while in contrast, most people do their commute without having to concentrate on all the stairs that have to be traversed, all the standing on the train that might utilize energy that I just don’t have by the end of the day. And god forbid someone offers you their seat. If you were on crutches, maybe someone would be gracious enough, but usually not, so forget about a 30-year-old who looks like they’re 15 and totally healthy.
Some of my family and friends from Michigan have told me that I’ve adapted a little bit of that signature New York attitude. They tell me I’ve become “aggressive.” I don’t know if that’s true, but I do yell at cars and throw my hands in the air. I have dreams of a car getting so close but not hitting me that I slap the hood with my hand.
Sometimes I feel ambivalent about living here. It’s fun to say I did it, because I know there are many people out there who wish they could. But it’s not easy for anyone – there is always too much happening at once, and not enough kindness to go around. But for someone who has a chronic illness, it’s difficult, and draining, and totally not sexy.
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Leslie wrote for HealthCentral as a patient expert for Rheumatoid Arthritis (RA).