“Have you heard of Multiple Sclerosis (MS)?” The question lingered in the room like an uninvited guest. For years I had dealt with interludes of peripheral numbness and tingling up my body to chronic fatigue and leg spasms. Even though I finally had answers, receiving an MS diagnosis at 32 felt like a part of me had died. My perceptions were based on misconceptions and fear.
MS is a progressive neurological disease affecting the central nervous system. Our immune systems are slowly destroying the protective layer of the nerves, causing irreparable damage in the form of “lesions” or scar tissue.
MS is often considered an older person’s illness, yet it is primarily diagnosed in women in their 20s and 30s, who are three times more likely to get MS than men. Primary-progressive MS, a more debilitating form of MS, is usually diagnosed when people are in their 40s and 50s. I have relapsing-remitting MS, which presents as new or worsening symptoms followed by periods orecovery periods’s notion of wellness is very one-dimensional. The prevailing ideology is that those with chronic conditions have failed to look after themselves properly, and we’re vilified as weak or lazy. The narrative is often that you can “overcome” disability or illness, and if you don’t, you are somehow a failure. I always thought of disease as happening to others, so I was disassociated when it occurred. I discussed it with strangers as if I were talking about someone else and felt deeply ashamed.
Encouraging a community that has been so fundamentally misunderstood and stigmatized to feel empowered to share their disability when prejudice is so rife can be tricky. Disability is frequently left out of storytelling or mired in damaging tropes; disabled characters are portrayed as evil, stupid, or ugly. Mobility aids like canes are often used to accentuate villainy.
Actor Selma Blair had spent years documenting the often-unglamorous side of MS. When she walked onto the red carpet in 2019 after the Oscars using a mobility aid; she showed thousands of women with MS that you can be beautiful, accomplished, fashionable, and disabled.
Film star Christina Applegate announcing her recent diagnosis has again placed MS firmly in the media landscape. Since MS is so widely misunderstood, recognizable role models speaking publicly about their experiences can help shatter misconceptions, make women feel less lonely, and highlight the importance of early medical interventions. It also tells us that being disabled doesn’t mean giving up the essence of who you are.
People often associate MS with needing a wheelchair, but this is not the case for most of us. Since my MS is invisible, I regularly get told I don’t “look sick” as a compliment. Although I’m grateful — as I don’t particularly want to look sick — I think the problem with these statements is that people have a fixed idea of what disability should look like.
