Marie Cooper, a former nurse, learned she had MS when she was 50 and could no longer ignore the numbness creeping up her legs and arms. Since then, the New Jersey resident has been on the MS roller coaster. She says her friends have been key to her coping with the effect of MS on her life, her family, her work, and her health. “I have wonderful friends who are very supportive,” says Cooper, a widow. “If it wasn’t for my friends, I wouldn’t be able to cope at all. I am very grateful for them and their patience and understanding and the fact that they can be sympathetic without being morbid about it.” Angel Blair, MA, a client services specialist with the Multiple Sclerosis Association of America, says, “It’s important for someone who doesn’t have MS to meet people where they are.” To do that, it helps to be aware that MS affects each person differently — and that the way MS affects any one person can change over time or even fluctuate from day to day. Here are some tips for maintaining or cultivating a friendship with someone who has MS. For Washington, his desire to talk with someone about his experiences with MS depends on the type of relationship he has with that person. He says there’s a balance when it comes to what kinds of questions you should ask someone with MS — if at all. “Watch how close you are to the person,” Washington advises. If you’re only casually acquainted with someone with MS, he recommends waiting for that person to open up to you about their condition first before asking them questions about it. “Don’t aim to pry in ways like, ‘Oh, I heard you have MS. How’s that going?’” Washington says. “This typically leads to a lot of surface-level questions, which isn’t best for people with MS. Since we live with it, our minds aren’t on surface-level things.” When it comes to his close friends, Washington says they often ask specific questions that give him space to divulge the ups and downs of life with MS. “It’s not just, ‘How are you doing?’ It’s, ‘How are your symptoms going?’ Or, ‘I remember you saying your vision wasn’t doing so well last time. Is it any better?’ The more specific you can get with your questions, the better,” Washington says.
Ask Your Friend How You Can Best Support Them
Shortly after completing undergraduate nursing school, Rebecka Vasquez, 29, began regularly experiencing numbness in her hand, which later extended up her forearm. She also experienced incidents of left-leg paralysis while walking, which she says would last about 20 seconds before going away. The Phoenix-based ICU nurse sought medical help, and in September 2016 was diagnosed with relapsing-remitting MS. After she received her diagnosis, Vasquez says, “telling friends was hard.” She says she didn’t share the news with many people for almost a year. Being an ICU nurse, she didn’t want anyone to think less of her or think she couldn’t do what others could do, she says. Vasquez gained the confidence to open up more to others about her diagnosis after meeting her now-husband one month after she learned she had MS. She says her husband accepted her condition knowing it could affect their future together and always encouraged her without looking down on her or pitying her. What’s most helpful for Vasquez is when her colleagues ask her how she’s feeling that day. “When you have that one friend who says, ‘Hey! How are you? Can I do anything to help you?’ it makes all the difference in the world because you acknowledged me, you acknowledged this disease, and you’re just trying to help in any way you can,” Vasquez says. She says the empathy from the nurses she works with has changed her day-to-day life for the better. “Anyone who acknowledges that they may not understand everything about MS, but they’re there to support in any way possible, is helpful,” Vasquez adds.
Be Open to Change
A new MS diagnosis or a change in symptoms can change the relationship you have with a friend. “If this person has always been your tennis buddy or your bar-hopping buddy, you need to ask yourself if your friendship is about the person or the activity,” says Rosalind Kalb, PhD, a psychologist and a consultant to the National Multiple Sclerosis Society (NMSS) in New York City. “It takes creativity and a real commitment to the person to nurture a relationship when the rules change,” Dr. Kalb says. For example, if you try to make plans with a friend who has MS, and they either decline the invitation or must later cancel the plans due to MS symptoms, Washington recommends respecting their decision without asking why. “Just understand they have a condition,” Washington says, adding that MS symptoms like fatigue can make going out and about difficult or even impossible on some days.
Get the Conversation Started
When someone you love is diagnosed with MS, “The most supportive thing to say is, ‘I want to support you — help me figure out how to support you,’” says Kalb. If you need some ideas on what to talk about, try these:
Ask how your friend is doing, then be ready to listen. Listening without judgment or interruption is one of the most helpful things you can do for any friend, including one with MS.Ask how you can help — but be honest about what you can provide, and say no if you really can’t give what your friend needs. Kalb also points out that you can offer to help in specific ways if you see a need.Ask where you can get more information about MS. Let your friend direct you to resources that will ease the burden of explaining MS. Or help your friend find such resources so you can learn together.Say, “I’m here with you.” “Living with MS is a roller coaster of emotions,” Blair says, and feelings of loneliness are not uncommon. Continuing to reach out to your friend lets that person know that someone cares and he is not completely alone.Use “I” statements. If you are concerned about your friend’s physical or mental health, “Be able to say, ‘This is what I notice, and because I care about you, please talk to your doctor,’” says Blair.Just hang out. “If people would just come over and be their normal selves and do their normal things and be a normal friend, that is key,” says Erik Smith, a 38-year-old systems administrator in Dallas who was diagnosed with MS 11 years ago. “Helping” someone is not the same as valuing and respecting that person as a friend, so don’t make all of your interactions with your friend with MS about providing assistance.Join the same social media network. Cooper says she values the supportive comments she gets when she posts about upcoming tests and personal concerns. Remember that like anyone else, people with MS enjoy having conversations unrelated to their health, too. In Washington’s case, he likes talking with his friends about basketball and Netflix shows. He suggests limiting the number of questions about MS to two per conversation, unless the person with MS says they want to continue talking about it.
Know What Not to Say
With an open, honest friendship, you shouldn’t have to worry too much about making mistakes. Still, here are some conversational moments to avoid. “Oh, you’ll be fine!” To someone with MS, this comment comes across as dismissive of their health issues, Vasquez warns. “You’re tired today? I know what that feels like. I didn’t sleep the other night.” Tiredness and MS-related fatigue are two very different things, Vasquez says. According to the NMSS, fatigue caused by MS significantly interferes with one’s ability to function at home or in their career, sometimes leading to early departures from the workforce. “My distant relative had MS and …” “Don’t impose your view of MS on your friend,” says Kalb. And think carefully about the effect your story might have on your friend before you tell it. Hearing about someone else’s serious disability or complications can be frightening, while hearing what an easy time someone else is having when you’re having a hard time can reinforce the feeling that life — and MS — are unfair. “I heard about this new treatment you should try …” Unless you also are your friend’s neurologist, don’t give medical advice. “But you look so good!” “MS is an invisible illness,” Vasquez explains. “Just because you can’t see it doesn’t mean it’s not there.” If this common double-edged compliment slips out, Kalb suggests following up with, “I hope you’re feeling as good as you look. Are you?” “Well, just count your blessings …” Sometimes it’s comforting to remind yourself of what you have to be grateful for, but being told to count your blessings when you need to vent or would like to talk about difficult feelings or experiences usually isn’t one of those times. If you want to talk about blessings with your friend with MS, just tell your friend how blessed you feel to have their friendship. “Oh, So-and-So has MS. Do you know him?” Having MS isn’t a club where everyone knows everyone, points out Cooper.
