I don’t remember the exact day my mom was diagnosed with Multiple Sclerosis (MS). I was only in first grade, so what I have instead are vague memories in elementary school of my mom wearing sunglasses more often than usual and using a cane. My mom, however, has the exact moment when she knew something was wrong etched in her memory. While at one of my brother’s soccer games, she looked out at the grass and noticed the ground looked uneven.

MS is an autoimmune disease of the central nervous system (the brain and spinal cord). The immune system attacks the myelin, which is the protective sheath around nerves, interrupting the signals the brain sends to the body. This can cause difficulties with vision, walking and more. For example, when you walk, the brain is sending various signals that tell the rest of your body to cooperate. With MS, these signals experience issues; the brain tells the body to walk, but the right leg might have a delay in lifting, the left leg may drop too quickly, or the signal is lost completely, and walking does not happen.

MS is a complicated disease. It affects individuals differently, often for no explainable reason. Some individuals who have had MS for decades are able to walk or participate in sports, while others lose mobility in their legs and require assistance through wheelchairs or powerchairs. Even within one individual, MS can be unpredictable. For example, Shan Smith, diagnosed a few years prior, competed on the reality show Survivor, where contestants endure extreme conditions and grueling challenges. When she was first diagnosed, she lost vision in her right eye and her legs were going numb. After extensive therapies, Smith improved, and at the time of the show, her MS was in remission allowing her to compete.

However, not everyone’s MS responds to the same treatments or therapies. The ability to compete on a show as intensive as Survivor is possible for some people with MS but would be completely out of the realm for others. This isn’t to minimize anyone’s experience, but to highlight how differently MS affects each person—even within the same individual over time. Because MS varies so much, people’s perspectives are often skewed to whomever they know with MS. This can make it emotionally challenging to explain their situation, for example, why they must use a wheelchair while someone else uses only a cane. These difficulties are often exemplified by unconscious ableism – “But you don’t look sick!”. 

Actress Christina Applegate, known for Married with Children and Dead to Me, has brought awareness towards MS ever since her diagnosis in 2021. She speaks candidly in interviews and on her podcast MeSsy, which she hosts with Jamie-Lynn Sigler, an actress who has had MS for over twenty years. Applegate has spoken about lying awake in pain, facing the notion that she “appears to be in good health despite the pain,” with MS being an “invisible disease”. When she received her Hollywood star, she went barefoot because wearing shoes made the pain worse. My mom has appreciated her realism about MS because at the end of the day, when you remove all the medical jargon and technicalities, what you have is a pretty nasty disease.

MS is a big part of my mom’s life, but it is far from the only thing about her. She loves Winnie the Pooh. She holds tight to her faith in God. She laughs so hard she can’t get words out – often at things we don’t find nearly as funny as she does.  And of course, she loves being a mom. MS, is going to change a person’s life, but my mom, like many others, is much more than her disability.