How to Stay Connected When Living With MS


1 Nov 2023 | ~6:28 Engagement Time


Roz Kalb , Psychologist

Reviewed by

Linda Trettin , Neuropsychologist


Is MS making it harder for you to stay connected with others? Or to participate in social activities when you do get out? Maybe you’re finding that your “comfort zone” has gotten smaller and more confined.

Many aspects of life with MS can make socializing more challenging – fatigue, mobility issues, lack of accessibility, depression, an unpredictable bladder or bowel, and problems with thinking and memory to name just a few. Now is a good time to think about ways to keep your connections going or regain some you may have lost. A “comfort zone” that has gotten too narrow can lead to feelings of isolation and loneliness. The more isolated you become, the harder it is to reach out.

Connections rely on open communication, which means letting others know what you need, what you enjoy, and what you’re interested in, while also making sure to ask how they are, what’s going on in their lives, and what’s on their minds. In other words, it’s about finding shared interests and activities while also being open about the accommodations you need to help make your shared activities a success.

Here Are Some Tips For Retaining or Regaining Your Connections With Others:

  • Make a list of the people who are most important to you, whose company you most enjoy, and with whom you feel most comfortable. Think about what makes those relationships work for you and how you might apply that to other relationships? For example, are you more up front about your challenges? Do you agree on shared activities that are more likely to be enjoyable and successful for you both? Do you agree on a Plan B for social plans you make in case your MS is acting up?
  • If you have relationships that were based on activities you can no longer do – for example, a weekly tennis game or dine-around dinner dates – can you suggest a new focus for your time together? While some people may be more interested in the activity than your relationship, others may be eager to try new activities with you.
  • Take a good look at your mobility tool chest. Are you equipped with mobility aids for a range of activities? Are you willing to use whichever tool is likely to make your shared activity enjoyable and safe? Others will find it more fun and relaxing to spend time with you when they don’t have to worry about your safety and stability from minute to minute. While a cane or wheeled walker may be perfect for some outings, a motorized scooter can make many adventures (shopping, museums, parks) more fun and comfortable for both of you.
  • If there are people with whom you’d like to connect or re-connect, don’t sit back and wait for them to call you. Reach out, invite them to do something – even it’s just to pick up a pizza you’ve ordered and bring it over for dinner and a movie. People may be reluctant to reach out to you simply because they don’t want to do or say the wrong thing – so you need to lead the way.
  • If reaching out is challenging for you, or you find it difficult to motivate yourself to make that call, consider setting up a weekly or monthly lunch date or adventure with a family member or friend. You can always flex with a Plan B if your symptoms are acting up.
  • Since most MS symptoms are invisible to others, you may want to come up with ways to explain the symptoms people can’t see. Once they understand about attentional problems or processing speed problems that make a noisy restaurant difficult, or bladder issues that make an accessible bathroom a high priority, or fatigue that makes late activities or long adventures challenging, you’ll find it easier to brainstorm ideas together.
  • Assume positive intent. Most people are kind and respectful. If people with whom you’ve been friends in the past seem to be pulling away, reach out and try to find out why. Let them know it’s okay to ask you questions about your MS, your abilities, and your challenges. Openness creates the bridge to connection – or re-connection – so be ready to take the first steps.
  • If you find yourself being pretty self-absorbed, step back and focus on the other person. Let them know that you’re interested in their work, family, hobbies, adventures. They may be reluctant to talk about things that you can’t do as easily as before. Or they may worry that you’ll be upset or resentful. Giving people permission to talk about themselves shows that you’re interested in their well-being and happiness. They will value your interest and reciprocate.

Communication isn’t easy for most of us. It can take courage and determination to forge new connections or repair old ones. Not every attempt will be successful, but many will surprise you. It’s worth the risk. If you need one guiding principle as you reach out to others, remember to listen so that others will talk, and talk so that others will listen. This means listening with care, attention, and empathy, and talking with the same care, attention, and empathy. And keep in mind that body language and behavior are also forms of communication that impact our connections with others.