If you have multiple sclerosis, it can be a challenge to work. Almost half of patients aren’t able to return to their jobs after their diagnosis. Here, Sidney Sterling, 28, and Danielle Koblinsky, 38, share their biggest MS-related challenges — and rewards — in the workplace.
Danielle Koblinsky: I’m not going to lie — working with MS is challenging! It’s especially so in my line of work. I’m a full-time fitness instructor at the health club Equinox. Even after my diagnosis in my mid-20s, I still tried to teach 12 cycling and five heated yoga classes a week. I wanted to keep that up for as long as I could to keep the health insurance. But over the years, I’ve had to slow down. On my busiest day, I teach two classes in the morning and two at night. Even with a good five- to six-hour window in between both, I’m still exhausted.
Sidney Sterling: I’ve definitely had an easier time with it, both because my MS is very well controlled with medication, and also my job isn’t as physically demanding. I started a new gig about a year and a half ago. I do public relations for a cruise line. It involves a lot of travel, but I love it. I thrive on meeting new people and experiencing new places. I’m also relatively young and don’t have kids yet, so while my MS is so manageable, it seems like a good time to rise up the career ranks and make a name for myself in my industry.
Talking to Employers About MS
Koblinsky: I vibe on full transparency. The year after I got diagnosed, I worked part time at a bike shop here in Houston. I told my employer and she asked if I would consider doing the Bike MS: MS 150 here in Texas. I explained that I’d love to, but I couldn’t safely ride a two-wheel bike. She actually found a recumbent bike for me, so I could participate in the ride. It was also a good way to share my story in the Houston fitness community. It was a way for people I worked with to see me as an inspiration, not someone to pity.
Sterling: I can relate to that. I don’t want people to pity me either. Life with MS is hard enough; we don’t need to wallow in it. I don’t make a secret of my MS. My boss and my co-workers know I have it. But I also don’t disclose it when I apply for a job. Right now, my MS doesn’t affect my ability to do my job, and there’s unfortunately inherent bias in this world. I’ve been lucky that my employers have been very supportive.
Koblinsky: Mine too. Whenever I’ve had a relapse, my manager temporarily takes me off of cycle classes and has me teach meditation and barre classes. But since I still have a lot of trouble with balance, I always explain it to my class. They need to know why I’m not doing some of the moves with them or why I trip when I step up onto the raised platform. Otherwise, they might think I’m stumbling around drunk! Honestly, clients are so supportive. They think it’s great that I’m still teaching and being active and living my life, even with my MS.
Sterling: I think it’s important to get that message across. You can have MS and still be a badass and lead a fulfilling life. You just may need to tweak it in certain ways.
Figuring Out the Right Accommodations
Koblinsky: When I was diagnosed, a good friend of mine said, “Girl, you need to find ways to make life easier for you with this disability.” My first reaction to hearing the word disability was to freak out. But after a couple of weeks, I realized she was right. It does make my life easier to have a handicap symbol on my license plate. The energy I save when I park in the handicap spot, to get to my fitness classes or even to go to the store, allows me to be able to continue to do my job.
I also am a big fan of adaptive shoes like Cadense. When you have MS, it can be hard to lift your foot enough to clear the ground when you take a step forward. You either end up tripping or shuffling. But adaptive shoes usually have technology so that it’s easier to walk with a normal gait. They also tend to be more lightweight, which helps to minimize fatigue. I also swear by my handheld fan: I attach it to my shirt, so it blows cool air directly on me during my cycling classes.
Sterling: I used to get sick anytime I flew on a plane, which is problematic as I travel a lot for work. The medications I’m on make me more immunocompromised. So I started a daily preventative regime, which includes vitamin C, a probiotic, and sea moss. I let my doctor know before I started, to make sure it didn’t interfere with any medications. She said, “I don’t know if it will do anything, but if it makes you feel better, go for it.” I don’t know if it’s the supplements, or if it’s placebo, or if it’s just pure luck, but I haven’t been sick now for months.
Koblinsky: I am starting to look for other job options. I’ve been with Equinox for a decade, and I love it, but it’s hard on my body. I used to work as a salesperson at Lululemon, and I’d go back there, but I’d have to work about seven hours, standing on my feet, in retail, to make what I make teaching one 45-minute class. Another friend of mine is opening a franchise of The Vital Stretch and has offered me a job there, but I’d still be on my feet stretching people out for hours at a time. Two years ago, I tried to apply for disability, but I gave up. It seemed like an awful lot of work for a very little amount of money. I’d get $1,300 a month, and you can’t live on that. Every time I think about my future and my options, it takes my breath away for a little bit.
Looking Towards the Future
Sterling: Ten years from now, I hope I’m still crushing — and loving — my job. But there are so many unknowns. I might have to scale back, either because I have kids or because my MS is finally starting to flare. As long as I can continue to do a line of work that I love, I’ll be happy.
Koblinsky: I get uneasy when people talk about their goals. I grew up with a single mom and we lived paycheck to paycheck. We never thought about the future — we just tried to get through each day. My guess is my wife will continue to be the main breadwinner. I will work in some capacity, until I get to the point where I absolutely can’t. I’d love to find something community driven, where I make my own hours. Like maybe work with clients for two hours in the morning, then spend the rest of the day doing household tasks like cooking dinner and taking care of our dog. I’d love to get into motivational speaking, where I can connect with others who have multiple sclerosis, or another, similar condition. But like you, Sidney, I just take it day by day.
Show Sources
Photo Credit: Westend61/Getty Images
SOURCES:
Sidney Sterling, 28, public relations executive, Miami, Florida; multiple sclerosis patient advocate.
Danielle Koblinsky, 38, fitness trainer, Houston, Texas; multiple sclerosis patient advocate.
The Consortium of Multiple Sclerosis Centers: “Multiple Sclerosis and Employment: Understanding the Definition of ‘Reasonable Accommodations.’”
