Patient Blogs | Multiple Sclerosis
MS Can Isolate You
photo of man sitting alone on bench by water

One of the hardest things about a chronic condition like multiple sclerosis (MS) is how your life starts to shrink. People don’t understand your situation; they drift away, and you can’t easily get out to where people are. A disabled life can get lonely, but we can do some things to avoid isolation.

In a thread on the WebMD MS community, one member posted, “How do you deal with the loneliness? I don’t drive, my kids are grown and my husband works a lot. Most days I’m ok, but some days I just feel sad and lonely.”

A reader commented, “I hear you. Your children and mine are busy with their own families. We should not depend on them because they don’t understand. I lost my husband a year ago and live alone. I am so lonely and feel useless. I can’t cook, shop, do laundry or housework.”

“I no longer drive and can barely walk,” posted another. “I suffer from paralyzing fatigue and pain. I can’t afford assisted living and don’t want to go into a nursing home. I secretly would prefer to go Home to be with my husband but it’s not God’s will. The saddest part is that no one understands. The aloneness is awful.”

The community provided ideas they find helpful, such as hobbies like painting or drawing, doing things on the Internet, or having a nearby friend who will visit. One woman has three dogs for company. Another wrote, “I still text my kids sometimes. I reach out to my sisters. They all have different schedules so someone might be around. I do online Bible studies if I can’t get there in person.”

Some members are in despair. One wrote, “I just sit and think this is life and for HOW MANY MORE YEARS? UGH! This can't be.” Another replied, “I’m an only child, parents passed away, never married, no kids, I know the feeling.”

My Experience Being Alone

I’m grateful to have more social contact than some.  My wife, Aisha, works part time, so she’s around some days or evenings. I’m lucky and smart to live in an accessible high-rise apartment building, so I can get out in my scooter. I can visit people in their apartments, in the lobby, or outside, or go places in the community.  

I don’t know what I’d do if I lived in a standalone suburban house, especially if it weren’t accessible. I don’t know what I’d do without my mobility scooter.  Just stay in bed or in front of the computer all day, I guess.

Still, I have a lot of alone time.  Even before MS, I was a writer, which means spending a lot of time with my thoughts or in front of a keyboard.  I’m OK with being alone if it doesn’t go on too long, but after a couple of days alone – like when my wife is away -- I start calling everyone I know.  If I can’t reach anyone, I’ll join a conversation on social media, but it’s not the same as real human contact.

I agree with the community members who said, "People don’t understand." I have an 11-year-old granddaughter named Anaya who lives across town.  I almost never see her because she lives up two flights of stairs. So my wife thinks I don’t want to see Anaya, that I’m avoiding her. Aisha doesn’t realize how hard it is to travel in my scooter by bus, change buses, and then to get to Anaya’s street and not have anything to do with her. 

Sometimes there will be a street art exhibit she’s interested in, or I can go to one of her performances or school programs. Then we can visit for a few minutes and share a hug. It can be a long way to go for that brief contact. On rare occasions, I can take her out for a sandwich, or her father brings her to my apartment.

How I Avoid Isolation

I wonder if some lonely people with MS could use more mobility assistance.  Several commenters said they are too weak to get out, but a scooter or wheelchair might fix that.  They might need to modify their home, which can be expensive but lifesaving.  A more radical step that appeals to me would be selling the house and moving into an accessible apartment.  If you don’t need it now, you probably will eventually.

They could use paratransit or a ride service.  It’s tough if you can’t afford Uber or Lyft, but a lot of places have paratransit that’s almost free, and you don’t necessarily need to be in a wheelchair to qualify.

I don’t use any ride services myself.  I can get most places on city buses.  I try to find people to go with me, but if I can’t, spending time in nature or visiting a museum or a different neighborhood alone can also be interesting.

There are other ways to connect with people. One group member in her 80s who lives alone says she will invite someone for lunch. “If cooking is not for you, then order food from a local restaurant that delivers. Maybe your invited friend will drive!!” 

I do that kind of thing.  I’ll create a very small meal, like one or two dishes, some of which may be leftovers, and share it with a neighbor who will help with serving and cleaning up.

If you don’t know anyone, you have to reach out.  Get out in the community and talk to people, or at least join an online community. You might be able to connect through Nextdoor.com or Meetup.com. I think it’s important to keep meeting new people.

My mother died at 91 and never became isolated. As friends died or moved in with children or assisted living, she made new, younger friends in her apartment complex.  Reaching out is hard, especially if you’re shy, but it can be done. 

I’m not as social as Mom was, but I recently reached out to a neighbor I met at a bus stop, and now he walks with me around the neighborhood and we go to political stuff together. 

I find a good way to start in with someone new is by asking them for help with something. Most people like to be asked; helping makes them feel good about themselves. 

Other ways to connect include joining a group, maybe for reading, gardening, visiting with other pet owners, or some kind of activism.  MS support groups are obvious choices; maybe a few group members can become your friends.

On the Community thread about loneliness, one member suggested an online exercise and chat program called Working on Wellness, supported by the MS Society. She said they have chat four mornings every week, then chair exercise. “Or” she wrote, “just join to chat!” 

 

To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.

 

 

Photo Credit: gokhanilgaz / E+ via Getty Images

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David Spero, RN

David Spero, RN

Diagnosed since 1989

David Spero, RN, became a writer and health coach after being diagnosed with multiple sclerosis in 1989. He writes books and blogs about living with chronic illness and the social causes of illness. A married father of two and grandfather of one, Spero is active in causes including health care, peace, and the environment. See his books; follow him on Medium or Twitter.

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