31 Days of MS: The journey of a queer MS warrior

by Bionews Staff | March 16, 2023

A young, red-haired, white woman who appears to be in her early 20s, and wearing big, black, designer glasses and red lipstick, smiles at the camera while holding up a book that partially says "ache." She is wearing a gray turtleneck sweater and is sitting on either a couch or a chair in a nondescript room.

Photo courtesy of Scarlett Ward

Day 16 of 31

This is Scarlett Ward‘s story:

My name is Scarlett Ward, and I’m 29 years old. I was diagnosed with multiple sclerosis (MS) when I was 27, after a particularly nasty relapse left me in the hospital, unable to walk, talk, read, write, or swallow.

I began to show symptoms years before, when my right arm and hand went completely numb. But I shrugged it off as a trapped nerve. A few weeks before my relapse got bad in 2021, my legs went numb, my speech became slurred, and I had trouble swallowing food without choking. I went to the emergency room several times but was told it was anxiety or period hormones — as though I hadn’t had periods my entire life.

Because I was ignored, I fell into such a poor state of health that I was bedbound in the intensive care unit for a month and had to learn how to function all over again. I don’t remember much about that time other than the MRI scans, the loneliness of being trapped in my body and unable to communicate, and the fear of not knowing what was happening.

As a poet and an equestrian, being unable to read, write, speak, and walk, let alone perform or ride my horse, was particularly distressing. However, with steroid treatments and therapy, I regained all of these abilities. I am now on a twice-yearly treatment of Ocrevus (ocrelizumab).

I was privileged to be able to move back in with my parents, and I’m grateful for my amazingly supportive family.

I still have foot drop, muscle spasms, bone-aching fatigue, slow speech, and sensory issues, such as pins and needles in my hands when I’m tired, but so far, I’ve found the biggest issue since my recovery is PTSD. It’s draining to live your life in fear of what’s around the corner.

Relapsing-remitting MS is the ultimate gaslighter, tricking you into thinking you’re better only to serve you with a big bowl of harsh reality.

But being diagnosed also helped catalyze me to come out as queer, and as horrible as MS is, it’s helped me make some great changes in my life (because YOLO!). It’s really important that we spread awareness of symptoms to help people catch it early and to raise awareness of these communities to combat those horrible feelings of isolation that come with being diagnosed.

Multiple Sclerosis News Today’s 31 Days of MS campaign will publish one story per day for MS Awareness Month in March. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofMS, or read the full series.

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Bionews Staff Bionews, the owner and publisher of this site, employs science writers and editors, most of whom have PhDs in the life sciences, as well as veteran journalists, who ensure stories are well-written and easy to understand. Our stories undergo a comprehensive fact-checking and editing process to confirm accuracy, objectiveness, and thoroughness in order to best serve our audience of patients and caregivers.