How my perspective on MS awareness has shifted since my diagnosis

Until my relapse last summer, multiple sclerosis (MS) hadn’t really affected my daily life in nine years, so the recent MS Awareness Month made me pause. Living with the disease sometimes at the forefront and sometimes in the background has shown me how much the meaning of “awareness” can change.

When I was diagnosed with relapsing-remitting multiple sclerosis at age 16, awareness felt immediate and personal in a way I didn’t choose. It wasn’t a campaign, a color, or a month on the calendar. It was the symptoms that didn’t make sense, the fatigue that became all-consuming, the eye patches and sight cane that everyone noticed, and the stark realization that I could no longer fully control my body or take it for granted.

When I was labeled a hypochondriac, I advocated. I wanted people to know that MS existed. I wanted to be believed.

After a few years, awareness became synonymous with survival. It meant learning how MS showed up in my body and trying to understand what the future might hold. MS was all-encompassing at the time — everything felt loud, every symptom mattered, and every decision felt weighted.

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This year’s awareness month in March looked very different. Nearly 20 years after my diagnosis, I found myself, in some aspects, on the other side of the conversation. I dedicated the month to teaching other functional medicine practitioners about the immune system: how to think about autoimmune disease, look upstream at drivers, recognize patterns, and support people whose bodies don’t always behave predictably.

Honestly, even writing that still feels a little surreal. Because, in addition to that role, I am still a patient. I still see my neurologist, have regularly scheduled MRIs, and live in a body that requires extra attention, awareness, respect, and rest.

That’s the side of awareness that doesn’t always get the spotlight. Awareness doesn’t disappear because you learn more; it doesn’t resolve because time passes or because you advocate once or twice. Instead, it changes shape.

From the outside, awareness often looks like recognition of MS and maybe a few of its symptoms, or knowing someone who has the disease.

From the inside, it’s much more practical. It’s knowing how your body responds to daily life — stress, sleep, temperature changes, etc. — and recognizing when to push and when to pause. It’s accepting that feeling “fine” doesn’t always mean everything is perfectly managed, but that maybe things are good enough to find balance in the moment. And it’s showing up for all the ongoing care and maintenance that keep the body moving forward.

Awareness isn’t a moment; it’s a rhythm. That rhythm doesn’t always slow over time, but it does become more familiar.

What feels like a full circle to me this year is that I can hold more now than I could at 16: more knowledge and perspective while still holding MS in that balance, too.

Awareness didn’t end when I learned what MS was or told the world it existed. It didn’t disappear after treatment or become fixed. It expanded. It’s now something I live with, work with, and in many ways, help translate for others, patients and practitioners alike.

Awareness isn’t just recognizing that a disease exists or campaigning for a cure, but understanding what it requires over time. It’s seeing both the visible and the invisible, the milestones and the maintenance.

This year, awareness doesn’t feel like something I’m trying to build. It feels like something I’ve grown into.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.