Breaking Misconceptions: 5 Things You Should Know About Multiple Sclerosis

In early March 2024, my life was turned upside down with a diagnosis of relapsing-remitting multiple sclerosis (RRMS). Since then, I’ve been learning to navigate this new reality and helping those around me understand what it’s really like to live with MS. Here are five things I wish everyone knew about this often misunderstood condition.

1. Fatigue: More Than Just Feeling Tired

Before my diagnosis, I knew what exhaustion felt like. As a mother, athlete, and martial artist, I often pushed through late nights and early mornings. But MS fatigue is different—imagine a wall suddenly appearing, stopping you in your tracks. No amount of caffeine or determination can break through. When this fatigue hits, my limbs feel like lead, and my mind struggles to focus. Sometimes all I can do is surrender to it, crawling into bed to recover for hours, or even days.

2. Visible and Invisible Symptoms

One of the most challenging aspects of MS is that symptoms can be both visible and invisible. Some days, you might see me struggling to climb stairs, using the handrail to haul myself up as my legs rebel. Other days, hot, humid weather leaves me weak, nauseous, and dizzy. But many symptoms, like cognitive fog, headaches, or blurred vision, are invisible. Just because I “look fine” doesn’t mean I am. Instead of saying, “You don’t look sick,” consider asking, “How are your MS symptoms today?”

3. Each Person’s MS Journey Is Unique

MS affects everyone differently. Some people need mobility aids, while others might face vision issues, cognitive challenges, or sensory loss. For me, there are days when I need extra support, and other days when I can move with little visible difficulty. This diversity in symptoms is due to where MS has damaged nerves in the brain and spinal cord, each injury affecting a different function. No two experiences are the same, and there is no one-size-fits-all approach to understanding or managing this disease.

4. No Single Outlook on Life with Multiple Sclerosis

Not everyone sees MS the same way. While some may embrace it as a chance to slow down and appreciate life, that’s not always how I feel. I miss the multitasking, energetic version of myself and have only reluctantly accepted the limitations MS has imposed. Please don’t assume we should all find a silver lining. Give us the room to feel, to vent, and to be real about what we’re going through. Comments like, “At least it’s not worse,” or “Just stay positive,” may be well-intentioned but can feel dismissive.

5. There’s No Hidden Cure

When people learn about my MS, they often want to help, sometimes suggesting diets, exercises, or miracle cures. I regularly see a Neurologist, who specializes in MS, and would be the first to know if there were a breakthrough. While I welcome new, legitimate research, please be cautious about sharing so-called “cures” from unproven sources. There’s no hidden answer that will make my MS go away, and hearing otherwise can feel frustrating. What I need most is understanding, support, and patience on this unpredictable journey.

Unseen Walls

They say, "But you don’t look sick,"

as if my battles are painted clear,

but some walls rise quietly, thick,

in shadows, where they disappear.

My legs grow heavy as stones,

climbing stairs feels like climbing grief,

my body becomes all bones,

and rest, a hard-won relief.

The fire fades, limbs become lead,

my mind lost in hazy waves—

a sudden wall, a bed like a thread

pulling me into silent caves.

They say, "Just stay strong, stay kind,"

"Look for the bright side, stay free."

But strength is woven, not always aligned

with light that others may see.

This journey’s mine—unseen, unknown,

marked by fatigue, both still and steep.

Each step I walk, I walk alone,

past walls unseen, into spaces deep.

Living with MS is a constant balancing act, one that has made me rethink everything I thought I knew about strength, endurance, and resilience. I hope that by sharing these insights, I can help bridge the gap of understanding for those who want to know what it’s like to live with this complex condition.

Much Love,

E.P.