Multiple sclerosis is an invisible disease, making it impossible to assess the extent of someone’s condition or symptoms by looking at them. This has led to a deficit of public knowledge on what MS really is. My mom, Wendy Clem, was diagnosed with MS before I was born. However, I know very little about the real-life experiences of people with MS. Besides the hurdles of the symptoms themselves, patients face challenges, including finding the right doctor, approaching the topic with loved ones and managing the cost of medicine.
MS causes lesions (degradation) to the protective covering (called myelin) on nerves. It may cause a plethora of symptoms ranging from hardly any to blindness or paralyzation, and it has no cure, according to the National MS Society.
My surface-level research prompted me to Google Image search “multiple sclerosis.” The results reflected my minimal education on the disease: in a 10-second scroll, I did not see a single human face. I saw plenty of diagrams of lesions and cartoon human outlines, but there was no accessible resource where real people could paint a collective, highly diverse picture of how MS affects daily life. Thus, I wanted to provide that source here.
Experts Meagan Harms and Dr. Jacqueline Marcus, M.D. both specialize in MS care. Harms is a researcher for the UCSF’s (University of California San Francisco) EPIC (Expression, Proteomics, Imaging, Clinical) study, which my mom has been a participant in for over two decades.
She described the goal of the study as to determine the “genetic or environmental factors may lead to onset of disease.” Researchers collect blood and cerebral fluid for genetic markers in addition to running MRI scans. Marcus was shocked to discover a lack of MS specialization among neurologists, despite the fact that MS is the most common progressive neurologic disease among young adults worldwide. “When I joined Kaiser, I was the only one who had done fellowship training in MS out of about 100 neurologists,” she said. Marcus also noted research advancements in recent years, including potentially lifesaving lesion- and symptom- preventative medicines that are being introduced at rapid rates.“There used to be zero drugs on the market. Now there’s over 20,” she said.
Dave Pierce, an MS support group leader from San Jose, has felt the importance of a specialized neurologist like Marcus in his personal story of the disease’s progression. He volunteers to lead an online support group in San Jose to share his story to others who may be disillusioned by the lack of an available MS community. His symptoms have affected him significantly. “When I first started this I was almost crawling. I was in so much pain,” he said. He recounted what his neurologist said to him during his first appointment. “Dave, I will guarantee that you will walk,” Dave recalls him saying. While he couldn’t imagine it at the time, he began to regain bodily control.
However, not all cases have such severe implications. Nadine Radovich was initially worried about her diagnosis. “ I was overwhelmed and I was very scared…my cousin had MS, and she died at age 40. I just pictured myself going down her path,” she said. Her cousin was using a wheelchair by age 21. In contrast, Radovich maintains an active lifestyle in her retirement, attending exercise classes regularly. This portrays the wide spectrum of disability on which each member of the MS community lies.
Approaching the topic with family and friends is another obstacle. Pierce’s daughter Andrea, who has autism, took some time to get used to her father’s disability. “She was a little freaked out when I first started using a walker because she didn’t understand what it was,” he said. His greatest difficulty was overcoming the denial within his own mind. “It took me 10 years to accept– I wanted to go back to work and I didn’t want to be home,” he said.
I asked my mom why she chooses to keep her MS hidden. “I think I’m afraid of people making assumptions. I don’t want to tell people that I stopped skiing because of MS,” she said.
Kasey Darcangelo, a Navigator at the National MS Society from New Jersey, serves as a legal representative as well as simply a person to talk to for those struggling with the financial, medical, and emotional tolls of the disease. She advocates for the rights of those who are denied life-saving medicine, which costs around $94,000 per year according to the National MS Society. Insurance may cover some or all of this cost, but Darcangelo’s frustration stems from the companies’ lack of medical knowledge. “These are insurance companies with people with largely no medical experience denying that coverage,” she said. Such scandals often go unrecognized, causing patients’ unawareness of their prerogative of the correct medical attention, regardless of cost.
My mom hypothesized why MS hasn’t tractioned as much awareness as other diseases, even other autoimmune diseases. “We’re feeling the symptoms, but maybe they don’t look obvious to other people, so it’s a disease that you can kind of hide. It’s not easy to spy, recognize, or brand.”
Media coverage of MS stories would not only help our community members with MS to feel more supported. It would also bring to light the current calamities regarding receiving the appropriate medicines. Attending events such as Walkathons sponsored by the National MS Society this March will raise money to persist in finding definitive roots and a cure to this disease. However, I urge– most persuasively– to never make assumptions. From strangers to my own mother, I learned something new about everyone from these conversations. For all of them, MS isn’t defined what others can see, but rather their courage and resilience through the turbulence of their disease.
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