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multiple sclerosis

what's it like living with ms during a global pandemic?

'i'm trying my best to stay optimistic, otherwise, you're going to get your butt beat up by this disease.'

by diana duong

jun 4 2020

5 minute read

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what it's like living with multiple sclerosis during covid-19

fezzy azadi first learned she had ms when she was 24 years old. courtesy of fezzy azadi

canada has one of the world’s highest rates of multiple sclerosis in the world, with approximately 77,000 canadians living with it and 11 new people being diagnosed with the debilitating disease every day.

fezzy azadi is one of them. azadi was only 24 years old when she first found out she had multiple sclerosis (ms), an autoimmune disease that affects the brain and central nervous system. azadi, who is from toronto, and currently based in coquitlam, b.c., lost complete vision in her left eye in february 2019, going from 20/40 vision to 20/200 over the course of two and a half days. a month later, she felt numbness in her toes, which spread to her hips and eventually, she lost sensation in her left leg and then experienced weakness in both.

during the next six months, azadi lost fine motor skills in her right hand. she was on copaxone , a disease modifying therapy (dmt), but it was ineffective, and she continued to have relapses and a new lesions showed up on her mri.

in ms, lesions are areas of the brain or spinal cord that have become damaged or scarred. it’s caused by inflammation which comes from the immune system attacking the fatty myelin material wrapped around our nerves. with damaged nerves, the brain can’t properly send signals to the body. initial blood tests, neurologic exams, and brain imaging scans, like mris, help diagnose ms. the cause of the autoimmune disease is unknown.

whenever she would hold a pencil, she would write in an upwards slant or the pencil would fall out of her hands. her neurologist switched her ocrevus , a more aggressive dmt, which she’s been using since january. she’s also taking gabapentin every day to manage chronic nerve pain.

azadi currently uses a mobility aid when she’s outside her home. if she’s feeling well, she uses forearm crutches, but hopes that by her next infusion, she won’t need either. she has also been doing low-intensity workouts with her boyfriend, which helps her feel better every day.

her occupational therapist was the first person to suggest azadi practise her fine motor skills using makeup and youtube.

“my occupational therapist told me one of the best exercises i could do for my hands was something repetitive to work on those muscles. she knew i liked makeup, so she suggested i try doing makeup for an hour a day,” says azadi. “we were trying to find something because, let’s be honest, nobody likes doing physiotherapy exercises. as important as they are, nobody wants to just sit around and twirl their wrists, so she worked around and found me a solution.”

“my hand is a lot better now,” she says. “it’s not back to where it was, i can’t write for more than 15 minutes, and if i do, i start shaking and losing control; i’ve wiped eyeliner on my cheek multiple times because of that. but doing my makeup has really helped with how i feel and my outlook of life.”

“it’s definitely harder some days than others. some days, i have full-out meltdowns and i feel very lost and disheartened by the fact i’m 25 and have to use a mobility aid,” says azadi.

her youtube channel has also helped azadi reach out to others with ms.

“i’m trying my best to stay optimistic because i think it’s really important. otherwise, you’re going to get your butt beat up by this disease that’s never really going to go away,” she says. “other days, i know i have to be strong and help people who may not have support systems like i do. people on social media or youtube have reached out to say my story resonated with theirs and they didn’t feel like they had anybody to talk to. whereas my family, although i live across the country from them, they’ve always been there since the start.”

covid-19 intensifies the stresses of ms

like those living with serious health conditions, people living with ms has felt the impact of the global pandemic, not only in terms of access to care, but also in the sheer fear and anxiety of contracting the virus and the potential complications that could arise.

“for those living with ms, covid-19 is another uncertainty on top of an already complicated disease,” says pam valentine, president and ceo of the ms society of canada .

many people with ms already face financial challenges and barriers to care, says valentine. covid-19 exacerbates these circumstances which can add both physical and mental stress for vulnerable populations who may be also be feeling isolated.

as with the rest of the population, valentine says this global health crisis is creating further gaps for people living with ms — like eliminating access to physiotherapy, exercise, or face-to-face mental health supports.

while the ms society can’t provide in-person supports, it’s pivoting to virtual rehab and wellness programs , she says, offering virtual yoga, one-on-one peer support , and online group support.

covid-19 is also impacting drug trials and ms research.

“researchers must find new ways to keep their work going in their labs alongside the direct to person services,” says valentine. “this includes biomedical research, and clinical focused studies and trials.”

as for azadi, she feels like the year she had spent at home before covid-19 helped her mentally prepare for the pandemic. but the threat of the novel coronavirus has still made it hard to get outside.

“[the virus] introduces a new layer of fear, even though i don’t think it’s necessarily good to live in fear,” says azadi. “the constant worry and anxiety — it can be a little bit dangerous if you don’t find ways to manage it whether it’s through video games, music, audiobooks, or reading.”

she is working hard at making sure these emotions don’t affect her quality of life too much.

“there’s so much unknown about covid-19 and there’s also so much unknown about multiple sclerosis, so it’s hard to know if someone with ms is more at risk,” she says. “if the public guidelines are good enough for somebody with other pre-existing conditions, i’m sure it’s good enough for me.”

anyone with ms who needs support can call 1-844-859-6789 or msnavigators@mssociety.ca.

dduong@postmedia.com | @dianaduo

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'i'm trying my best to stay optimistic, otherwise, you're going to get your butt beat up by this disease.'

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