MS and Loneliness: 5 Ways to Combat Feelings of Isolation
If you have multiple sclerosis (MS) and have experienced moments of loneliness and/or isolation because of the disease, you’re not alone. In a survey conducted by the MS Society in 2017, 3 out of 5 people with MS said their condition made them feel lonely.
There are several factors that can contribute to loneliness and isolation in people with MS, according to a study published in March 2022 in Health and Social Care in the Community and one of its authors, Lauren B. Strober, Ph.D., a neuropsychologist at the Kessler Institute of Rehabilitation in Rahway, New Jersey:
- The unpredictability of MS. You may not know when you’re going to have a bad day, and that makes it difficult to make plans to do things with others.
- Restrictive symptoms. MS symptoms such as bladder incontinence, fatigue, cognitive difficulties, and pain may be tough to explain to others and get in the way of social activity.
- Mobility issues. It’s harder to be active and part of a community when you can’t get around easily.
- Unemployment. People with MS not only experience high unemployment (up to 80%) but also often have to leave the workforce prematurely—within three to five years of diagnosis—which means fewer workplace interactions.
In addition, it can be very difficult for a person with MS to adjust to and accept their body’s changes as their disease progresses, says Anthony Feinstein, Ph.D., professor of psychiatry at the University of Toronto and author of Mind, Mood, and Memory: The Neurobehavioral Consequences of Multiple Sclerosis.
“And it’s even more so as they see their friends, colleagues, and peers getting on with life and doing things that are no longer possible when you have a disease like MS,” Feinstein says.
Even though it may feel like a challenge, two of the best ways of overcoming feelings of loneliness and isolation are to socialize and to reach out to others for help, Strober says. That can include professionals, like a neurologist, psychotherapist, and/or occupational therapist, and also family and friends who can provide the social connectedness that you so need.
Here are five strategies for making socializing a bit easier and more realistic when you have a MS:
1. Play Host
“If a person with MS has difficulty visiting friends, then friends should be invited over,” Feinstein says. Keep the plans simple. For example, order takeout or have them over when it’s not mealtime, so you don’t have to prepare food. You can also let your guests bring whatever you will need for the gathering.
2. Say Yes to Help
Kathy Metivier, 70, of Rhode Island, has had MS since she was a teenager. In the past, she found herself saying no when people would ask whether they could help her. “You’re embarrassed,” she explains, “and you don’t want to appear weak.”
She says that over time, she’s learned that it’s better for her to say, “This is what I need, and this is what you can do for me.” People tend to want to help, and if you’re specific in what you want or need them to do for you, they’re usually happy to do it, she’s found. Letting others help you isn’t necessary all the time, but when it is, it’s a good way to stay connected to them, as well.
3. Join a Support Group
Both Feinstein and Strober recommend attending support groups as a way to meet people and stay socially active to help offset the feelings of loneliness that often come with a disease like MS.
Kathy agrees, saying that when you have MS, isolation can result; it’s easy to feel as though you’re the only one. Joining a support group is a great way to learn that’s not true, and to feel the camaraderie and support of a community of others with similar experiences.
You can find support groups that meet online or in person. Visit the National Multiple Sclerosis Society (NMSS) website to find groups near you. You can also use our MS community to connect with others living with MS.
4. Plan Activities That Are Accessible and Beneficial
There are tour companies that organize trips for people with disabilities, Feinstein says. You may feel more comfortable traveling with such a group because everyone can understand your physical limitations, and accommodations will be made for them.
Another idea is to partake in an activity that’s both social and beneficial to you. If you have the ability to swim, for example, you could take swim classes at a local YMCA or gym. “Engaging in activities such as swimming is not only helpful for improving motor skills but also a way of potentially building social contacts,” Feinstein says.
Engaging in intellectual pursuits such as reading, listening to audiobooks, and playing chess, sudoku, or word games can keep your brain active and may be helpful, too, to make you less anxious and down, Feinstein says.
5. Phone a Friend
Feeling a little less lonely is sometimes as simple as making a phone call or sending a text message to someone in your life.
Not sure whom to call? The NMSS has an app, Happy, that provides emotional support 24/7. You download the Happy app, make a call, and get connected with someone who can listen to you and lend support. The first call is free.
MS and Loneliness Don’t Have to Go Hand in Hand
Overcoming any challenges that keep you isolated from other people may feel difficult at times, but making an effort to connect with others can have a huge payoff.
“If you keep to yourself, people will not come knocking on your door, and you’ll feel more isolated,” Kathy says, speaking from experience. “You just have to put one foot in front of the other, realize there will be obstacles along the way … and set realistic goals for yourself.”
Think about what types of interactions and activities are most important to you, and keep making small steps that help you create and maintain the social connections you need.
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