I Have Multiple Sclerosis. It Takes Courage To Disclose It To The World.

by Joseph K. Clark

“Have you heard of Multiple Sclerosis (M.S.)?” 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 M.S. diagnosis at 32 felt like a part of me had died. My perceptions were based on misconceptions and fear.


M.S. 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 M.S., which presents as new or worsening symptoms followed by recovery periods. M.S. is often considered an older person’s illness, but it is primarily diagnosed in women in their 20s and 30s, who are three times more likely to get M.S. than men. Primary-progressive MS, a more debilitating form of M.S., is usually diagnosed when people are in their 40s and 50s.

Society’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. 

Multiple Sclerosis

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. It can be challenging to encourage a community that has been so fundamentally misunderstood and stigmatized to feel empowered to share their disability when prejudice is rife.

Actor Selma Blair had spent years documenting the often-unglamorous side of M.S. When she walked onto the red carpet in 2019 after the Oscars using a mobility aid. She showed thousands of women with M.S. that you can be beautiful, accomplished, fashionable, and disabled.

Film star Christina Applegate announcing her recent diagnosis has again placed M.S. 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. 

Since my M.S. 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. People often associate M.S. with needing a wheelchair, but this is not the case for most of us.

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. M.S. isn’t always a joy, but it’s not a life of constant sorrow, either. 

M.S. doesn’t mean I have suddenly forgotten how to function as a human being. My 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 M.S. as not being that bad; “You were fine yesterday,” bandied about in accusatory tones. Equally, I have been made to feel incompetent, and my abilities are questioned.

People who have no experience with illness or disability find both difficult to understand. Misconceptions are primarily rooted in misplaced kindness. There is a fear of saying the wrong thing. But shrouding diseases like M.S. in secrecy can perpetuate disability stigma and reinforce the often-subliminal message that disability is shameful.

Life with M.S. 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 M.S. is 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 why people choose not to take medication, from adverse reactions to cost to a fear of needles, but stigma and cognitive dissonance are significant contributors. Some don’t believe their disease is active enough to warrant medical intervention. Many avoid medication to downplay the severity of their condition or be 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 meetings, and injectable drugs are difficult to conceal because they leave bruises, so people opt out altogether. 

I am on immunosuppressant medication. This halts disease progression and renders me susceptible to illness, and the side effects can include liver cirrhosis and fatal brain disease, which isn’t ideal. There is a justifiable fear around M.S. treatments, but the benefits outweigh the risks for me.

Then there is the influence of the wellness industry. 

From the outset of my diagnosis, I was inundated with well-intentioned but unsolicited advice. I initially hesitated to take medication because I believed I did this to myself, so I thought I could fix myself. Did I know that positive thinking, CBD tinctures, dietary changes, and ayahuasca could “cure” my M.S.?

But we don’t believe that we are to blame for our illness. Medication and healthful interventions can work symbiotically. Diet and lifestyle are huge components of staying healthy with any disease. I still take supplements. I use complementary therapies. I am active. I eat an anti-inflammatory diet. 

Some frequently tout medication as “the easy way out.” This undermines the severity and complexity of an illness like MS. Ultimately; it’s down to choice. Still, people who decide not to take the medication to favor a more holistic approach are far more celebrated in the media and championed for being warriors. 

I believe this can damage perceptions of people with disabilities, and a more balanced portrayal is needed. Chronic illness isn’t a one-size-fits-all flash sale; we are not all heroes or tragic characters to be pitied. M.S. isn’t an illness we can “overcome.” It’s also entirely different for everyone. 

The more openly we speak about M.S., the more we provoke discussion where people can learn and understand. Blair’s upcoming documentary highlights the realistic and harrowing journey of undergoing HSCT chemotherapy after she had run out of medical options. 

There is incredible bravery in publicizing illness. Her story can ignite conversations, remove the stigma and educate by showcasing research and medical gains. The unpredictability of M.S. means it can be hard to depend on others suddenly; 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. 

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