Multiple sclerosis can be hard on your loved ones and friends as they might be confused how to act or treat you, especially when you don’t look sick.
After some discussion with family and friends—both with and without multiple sclerosis —I came up with three things to keep in mind that might help others better approach their friends and loved ones who are living with MS.
We have MS.
MS can present in many different ways, perhaps even as unique as each individual. Even in my small group of friends with MS, our symptoms vary greatly. Fatigue is a common symptom among us, but the rest are unique—including cognitive difficulties, depression, and paralysis. Because of our differences, we take different medications and undergo different supplemental therapies (and side effects).
Educating yourself about the basics of MS is a good starting point, but also learn about how MS impacts the specific person in front of you. Avoid comparisons. Even well-meaning advice can end up invalidating someone’s experience, especially when it is based on generalizations.
MS has us.
In many ways, MS has taken control of certain things in our lives that prevent us from keeping up with the rest of the world. Simple things like the inability to wake up and get ready in time can derail a lot of plans. The inability to control one’s bladder is not only an inconvenience, but may be a reason to decline social invitations. Overheating can make us tired and cranky, despite the pleasant spring and summer weather.
We don’t want a free pass, but we might need the seats nearest to the restroom, decline meetings in the morning, and be party poopers needing to get home before midnight. Please be patient and flexible with us, because you—as part of our support system—are really important to us.
We are not our MS.
We are the same people we have always been. We are not “multiple sclerosis,” just like a person with autism is not “autistic,” and so on. We still live our lives in general pursuit of happiness, with some adjustments. It would be an even better journey to go on with you all, our friends and loved ones.
Have your relationships changed since your MS diagnosis? Do you have any advice for friends and family?
Shortly after earning her MSW degree from Columbia University and starting a career in psychiatric social work, KM was diagnosed with multiple sclerosis. She stopped working in 2013 and became active in the MS community. She joined team Park Pedalers for Bike MS: Coast the Coast in 2014 and she will be riding with them again this year. She lives in New Jersey with her husband, two children, and her nursemaids—cat, Mali, and dog, Moby.