“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, at the time 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.
I have relapsing-remitting MS, which presents as new or worsening symptoms followed by periods of recovery. MS is often thought of as an older person’s illness, yet it is primarily diagnosed in women in their 20s and 30s, and women 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.
Society’s notion of wellness is very one-dimensional. There is a prevailing ideology that those of us with chronic conditions have failed to look after ourselves 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 illness as happening to other people, so when it happened to me, I disassociated. 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 tough. Disability is so frequently left out of storytelling, or else it is 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 has 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, enable women to 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 the majority 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.
A few months after my diagnosis, I got so overheated at a restaurant I had to go to the restroom and splash water over myself like a dying fish. As I sat on a disabled seat on the way home, basking in the glory of my leg spasms, a woman pronounced loudly that it was disgraceful for young people to take reserved seats. Societal assumptions dictate that to be disabled, you should look disabled. Mobility isn’t the only reflection of disability.
“Ableism” — societal prejudice against disabled people — is centered on the idea that disability is abnormal. Disability is seen as a burden. MS isn’t always a joy, but it’s not a life of constant sorrow, either.
My own internalized ableism about not wanting to be considered “disabled” ultimately means I downplay my symptoms to certain people. As a result, they tend to dismiss my MS as not being that bad; “You were fine yesterday” bandied about in accusatory tones. Equally, I have been made to feel incompetent, my abilities questioned. MS doesn’t mean I have suddenly forgotten how to function like a human being.
People who have no experience with illness or disability find both difficult to understand. Misconceptions are mostly rooted in misplaced kindness. There is a fear of saying the wrong thing. But shrouding illnesses like MS in secrecy can perpetuate disability stigma and reinforce the often-subliminal message that disability is shameful.
“I always thought of illness as happening to other people, so when it happened to me, I disassociated. I discussed it with strangers as if I were talking about someone else and felt deeply ashamed.”
Life with MS can be a gamble. Balancing social interactions, workload, anxieties and sleep is a struggle, especially as the world opens up. I have had to learn to be patient and manage my expectations. We also have to weigh disease progression with medication side effects.
A recent study in the U.S. found that nearly one-third of people under 40 with MS are not using disease-modifying treatments (DMTs), many of which can “reduce clinical relapses” — a flare-up of new or existing symptoms — and help prevent the formation of new lesions.
There are many factors as to why people choose not to take medication, from adverse reactions to cost to a fear of needles, but stigma and cognitive dissonance are major contributors. There are those who don’t believe their disease is active enough to warrant medical intervention. Many avoid medication to downplay the severity of their disease or being constantly reminded of illness. This social stigma leads to people not seeking medical appointments or sticking to treatment plans. Some infusion medications can be hard to hide because they require monthly appointments, and injectable medications are difficult to conceal because they leave bruises, so people opt out altogether.
There is a justifiable fear around MS treatments, but for me, the benefits outweigh the risks. I am on immunosuppressant medication. This halts disease progression but also renders me susceptible to illness, and the side effects can include liver cirrhosis and fatal brain disease, which isn’t ideal.
Then there is the influence of the wellness industry.
From the outset of my diagnosis, I was inundated with well-intentioned but unsolicited advice. Did I know that positive thinking, CBD tinctures, dietary changes and ayahuasca could “cure” my MS? I was initially hesitant to take medication because I believed I did this to myself so I thought I could fix myself.
But we are not to blame for our illness. Medication and healthful interventions can work symbiotically. Diet and lifestyle are huge components to staying healthy with any illness. I still take supplements. I use complementary therapies. I am active. I eat an anti-inflammatory diet.
Medication is frequently touted by some as “the easy way out.” This undermines the severity and complexity of an illness like MS. Ultimately, it’s down to choice, but people who decide not to take medication in favor of a more holistic approach are far more celebrated in the media, championed for being warriors.
I believe this can be damaging to perceptions of people with disabilities, and a more balanced portrayal is needed. Chronic illness isn’t a one-size-fits-all flash sale, and we are not all either heroes or tragic characters to be pitied. MS isn’t an illness we can simply “overcome.” It’s also completely different for everyone.
The more openly we speak about MS, the more we provoke discussion where people can learn and understand. Blair’s upcoming documentary highlights the realistic and harrowing journey of having to undergo HSCT chemotherapy after she had run out of medical options.
There is incredible bravery in publicizing illness. Her story can ignite conversations, remove stigma and educate by showcasing research and medical gains. The unpredictability of MS means it can be hard to suddenly be dependent on others; it’s an isolating and overwhelming journey. But I have also never felt more loved or supported.
Pre-diagnosis, I had so often taken my health and freedom for granted. Until I had neither last year, I hadn’t fully appreciated the value of both.