All relationships have their ups and downs. But if you live with multiple sclerosis, it adds in a whole other layer of challenge. The good news is research shows most folks with MS enjoy happy, fulfilling relationships with their parents, children, and close friends. Jennifer Gasner, 52, and Sidney Sterling, 28, discuss how living with multiple sclerosis affects their partnerships, friendships, and more.
Jennifer Gasner: In many ways, I’m lucky because I was already in a long-term relationship when I learned I had multiple sclerosis. I had already been diagnosed with a rare disease called Friedreich’s ataxia in 1990, at the age of 17, that left me in a wheelchair. My biggest fear at the time was that I’d never be able to date, let alone be in a relationship. But I found my boyfriend, Greg, and he has been wonderful. Still, when we drove home from the doctor’s office in 2014 after my MS diagnosis, I did ask him, “Are you sure you still want to be with me now?” It was a bit of a rhetorical question. I knew he would tell me that of course he would be there, no matter what.
Sidney Sterling: Jennifer, I felt the exact same way as you when I was diagnosed with MS when I was 16. I worried that I’d never be able to find someone who loved me for me and all the baggage that comes with my condition. But I met my husband, Adam, in my sophomore year of college. We got married this past July. I know one thing that attracted him to me was my advocacy for multiple sclerosis. He doesn’t see it as a disability — he just thinks it’s amazing that I do all that I do while I also live with MS.
The Daily Ins and Outs of Relationships With MS
Gasner: Anytime we want to make plans, Greg consults the weather. He knows that if it’s going to be very hot, I’m not going to have a lot of energy, and we should stay home. He also usually drives me for my infusion treatments. My health insurance also provides me with transportation, but Greg likes to be with me for emotional support.
Sterling: When Adam and I first started to date in college, I always worried about saying no to activities that would be too strenuous for my body, especially in the heat. But we’ve been together for eight years. I’m very comfortable now telling him it’s too hot for me, or I’m too tired, but he should go out and do something with our friends. It’s especially important now since I have a demanding job, and sometimes I really have to focus on energy conservation. Adam has a lot of empathy and always understands. That’s why I married him!
Gasner: I’m all about pacing and listening to your body. That’s why usually our date nights consist of us watching movies or TV shows in bed. Occasionally we go out with other couples, but we are both generally homebodies, even without an MS diagnosis.
Sterling: We love a good night in, too. But we’re both very social. When we met at the University of Miami, Adam was on the football team and I was a cheerleader. If I have enough energy, we’ll try to get back to campus for a game or go out to dinner.
Navigating Friendships
Gasner: When I was younger, I found it was definitely harder to navigate friendships and be social with all my physical limitations. But over the years, I’ve struck up close relationships with other people who live with disabilities. They are very understanding and very forgiving if I need to cancel plans at the last minute.
Sterling: It was definitely an issue for me in college. I wanted to be a part of everything, so I’d often force myself to go out even if my body didn’t feel up for it. Now that I’m in my late 20s, I have fewer close friendships, but they are a lot stronger. These are people who would be there for me at the drop of a hat. They understand my limitations with my MS and are willing to accommodate — meeting me for takeout at my house rather than out at a restaurant, or even canceling plans entirely. It’s also a maturity thing — as an adult, I feel I can say no to an activity without regrets.
Focusing on Family
Gasner: My parents were always very overprotective of me. When I told them in 2001 I wanted to leave my hometown in Wisconsin to move to California, they weren’t happy. But I felt it was important to be independent and have a life of my own. Twenty-four years later, I’m still here on the West Coast!
My father isn’t alive, but my mother is. We’ve gotten closer over the last couple of years since she’s been diagnosed with macular degeneration. Since I also live with a disability that prevents me from doing things like driving, I’ve been able to guide her to resources that help her, too. She definitely appreciates that.
Sterling: I still live in my hometown of Miami, and I’m very close to my parents. I see them once or twice a week. I know they keep a close eye on me, but they’re not overbearing. They didn’t pressure me to go to the University of Miami, for example. I decided to go there because a) I wanted to continue being a cheerleader, and b) I knew my entire medical team would just be down the street if I needed anything. But my parents got that it was a decision I needed to make by myself. My sister is two years younger than me and lives in NYC, but we constantly call and text every single day. She’s my best friend, but she’s also very supportive.
Gasner: You’re really lucky. My siblings are quite a bit older than me and they live in Wisconsin. They don’t quite get what my life is like with two neurological diseases. We talk occasionally, but there’s definitely a wall there. I don’t feel close to them. My parents have also helped me out more financially, too, since my work has been limited because of my disabilities. I don’t think my siblings resent that, but they don’t quite know how to deal with me.
Sterling: My parents gave me every tool to succeed. They have always encouraged me to be as independent as possible. When I took a high-powered public relations job that requires a lot of travel, they didn’t try to talk me out of it. They know I want to work and chart my own path and that I love my job and what I do. But I also have the security of knowing they are there for me if I need them.
Advice to Others When It Comes to Relationships
Gasner: You have value and you deserve to love and be loved. A diagnosis of MS is life-altering, for sure. But you are still the same person you were before your diagnosis. Anyone you want to be with should feel the same way. Don’t settle for less than that. I promise you the right person is out there.
During my early adulthood, I had a series of pretty tumultuous relationships because that was where my mindset was at that time. I didn’t feel good about myself due to my disability. But as I got older and came to accept myself and my body, I naturally gravitated towards a partner who respected me. Greg sees me as more than just my MS.
Sterling: Agreed! It’s important not to settle. There is someone out there who is your soulmate and will love you. They’ll even see your MS as a source of strength because you’re working to overcome something really challenging and very hard. Adam insists that my MS isn’t a disability — he sees it as a true special ability.
Gasner: Exactly. Disability and multiple sclerosis aren’t bad words. Your MS is only a slice of you, not who you are. You want to surround yourself with people who get that.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Sidney Sterling, 28, public relations executive, Miami, Florida; multiple sclerosis patient advocate.
Jennifer Gasner, 52, writer, San Diego, California; multiple sclerosis patient advocate.
Neurodegenerative Disease Management: “Impact on interpersonal relationships among patients with multiple sclerosis and their partners.”
