If you have multiple sclerosis (MS) and use a wheelchair, you’re aware of the physical challenges that can accompany using your chair, both at home and in public places. But for many people, the psychological and social aspects of using a wheelchair are just as daunting — at least at first — as the physical aspects.

Many people worry that friends and strangers alike will view them as less able, a fear that’s often confirmed by the glances or questions they receive. And when they’re not attracting extra, unwanted attention, many people with MS in wheelchairs feel that they’re ignored or overlooked in a variety of situations.

Another source of tension can be internal rather than external: when and how to ask others for help, something that comes naturally to some people but is quite difficult for others. In each of these cases, it can be helpful to know how others in similar situations have reacted, along with what they’ve learned, and how they’ve adapted, over time.

Fear of ‘Sticking Out’ With a Wheelchair

Some people’s jobs require them to regularly meet new people, such as clients and customers, which can be a source of tension if you use a wheelchair. This was initially true for Robert Shuman, a psychologist in Marblehead, Massachusetts, and author of several books, including Dropping Wood, Spilling Water: Illness, Disability, and Aging as Paths to Being.

A few years ago, “When people would come here initially, I would tell them, ‘I may be in a wheelchair, and a small black dog may greet you,’” says Dr. Shuman. But he came to realize that warning people about his wheelchair didn’t serve any useful purpose, other than soothing his fear that they’d be surprised. Now, “I don’t tell anybody anymore, and nobody has ever said anything” about the wheelchair, he says.

Jennifer Digmann, of Mount Pleasant, Michigan, was diagnosed with multiple sclerosis at age 23 in 1997. When she first started using a motorized wheelchair, she recalls, “I was so embarrassed that I would have to use a seat belt.” She had already delayed making the switch because of this concern, using a motorized scooter until safety concerns meant she no longer could.

But she still didn’t wear the seat belt on her new chair in public, until one day she slid out — and onto the floor at the grocery store. Her caregiver and some store employees had to hoist her back into her chair.

“I wish I would have realized it doesn’t matter what people think,” says Digmann, who began wearing her seat belt consistently after this incident. “You have to think about yourself and the quality of your life.”

Similarly, when Shuman first started using his handcycle, he didn’t want to wear a helmet or attach a flag to the bike. “I didn’t want to look like an old man in a chair, which is what I was,” he says. He has since come to realize that people actually welcome the sight of someone in a handcycle. In fact, he was once mistaken for a wheelchair racer when he accidentally joined the course of a road race, and the crowd started cheering him on.

Dealing With Questions About the Chair

Perhaps predictably, most questions about using a wheelchair come from children, says Mitch Sturgeon, of Portland, Maine, who was diagnosed with primary-progressive MS at age 38 in 2001. When this happens, “The mothers are appalled,” he says.

In these situations, “My first order of business is just trying to put people at ease,” says Sturgeon, since parents seem to fear that their children have caused offense. By putting a smile on his face and calmly answering questions, he says, “Then it’s just two people having a conversation.”

Shelley Peterman Schwarz, of Madison, Wisconsin, who was diagnosed with MS at age 31 in 1979, also frequently gets questions from children, and her answers depend on how old the child is. Sometimes she’ll mention MS, but more often she explains that “My legs don’t work like theirs do,” she says.

Other times, children want to know how fast her scooter can go, which she’s happy to answer or demonstrate. In these situations, “I decided to put a smile on my face and make it an opportunity to educate the public,” she says.

Being Ignored Because of a Wheelchair

Even as being in a wheelchair sometimes invites questions from children, it can also mean being ignored by adults.

According to Shuman, this tends to happen at front desks, often when he’s with his wife. “To some degree that’s the person, and to some degree I think that’s my wife, trying to be helpful,” and taking his place in the interaction, he says. “I wish that she wouldn’t sometimes. It’s like, ‘I can talk to those people.’”

But Digmann finds that even when her caregiver makes no effort to shield her from interactions in public, people address her caregiver on her behalf instead of her directly. “People will say to her, ‘What does she want?’” she says. “I’m right here, ask me!”

Sturgeon finds that restaurant servers often ignore him when he’s eating out with his wife or a larger group of people. “They’ll look at my wife and say, ‘What would you guys like to order?’” he says, speculating that “They’re not sure what’s wrong with me,” so they address his wife, “just to be safe.”

When this happens, instead of ordering for him or scolding the server, “She’ll just kind of pause, and that’s my cue” to order, Sturgeon says. “We work as a team to make sure they understand that it’s okay to talk to people in wheelchairs.”

While being ignored in public can be irritating, says Sturgeon, he believes that “It’s born from naivety and usually good intentions,” so it makes sense to keep your response cordial.

Changed Relationships

How your friends and family react to seeing you in a wheelchair may depend, in part, on how long you’ve had MS when you start using one. In Shuman’s case, “It had been so long that I don’t think anybody was particularly shocked,” he says. And his grandchildren only know him in his chair, which they sometimes climb onto while asking for a ride.

But when Sturgeon started using a wheelchair, he says that some friends he and his wife had long been socially active with “just sort of disappeared from the scene.”

After years of limited interaction with one of his friends, Sturgeon learned that the friend’s wife had told Sturgeon’s wife that he “’doesn’t know how to deal with Mitch in a wheelchair.’” Sturgeon says that when he heard this, he was glad to have an explanation for his friend’s lack of interest in seeing him, but was saddened that his friend’s hang-ups were preventing them from interacting normally.

“Going forward, I think I’ll make overtures again,” says Sturgeon. “And if it doesn’t work, it doesn’t work. I can only do so much.”

Asking for Help From a Wheelchair

One aspect of using a wheelchair that has pleasantly surprised Digmann is how willing strangers are to help her. “I’ve never had a person who isn’t willing to help me,” she says. “They’ll open doors for me, and they’ll move things.”

Help doesn’t always come immediately, though, such as when she can’t reach an item in the grocery store. “Then I’ll just sit there and have to wait for a fellow shopper to come by,” she says. Sometimes it takes as long as five minutes, Digmann says.

But asking for help isn’t easy for everyone — at least at first. Before his MS diagnosis, says Sturgeon, “I was a big, strong man who took care of people.” It took years before he was comfortable “approaching a small, older woman, who happened to be the one standing by the door, to hold the door for me.”

Gradually, Sturgeon says, he got used to asking people in public to help him, and it made his life easier. Even if people seem to be ignoring you, he says, once you get their attention and ask for a favor, “They usually jump at the opportunity. They smile.”