25 Years With MS: What Chronic Illness Has Taught Me
Friday 30th Jan
I’ve been living with Multiple Sclerosis for almost 25 years now.
That sentence still feels strange to write.
MS has been with me longer than many of my friendships, jobs, hairstyles, and versions of myself. It’s woven into my adult life so tightly that sometimes I forget there was a “before.” And other times, I grieve that version of me fiercely—the body that didn’t require planning, negotiating, or recovery time just to exist.
Living with a chronic illness like MS isn’t one long dramatic moment. It’s thousands of small ones. Quiet ones. The kind that don’t make headlines or inspirational quotes, but slowly shape who you are.
The Unpredictability Is the Hardest Part
MS is a master of unpredictability.
You can wake up feeling almost okay and go to bed barely able to move. Or you can plan something weeks in advance, only to cancel at the last minute because your body has decided it’s done.
People often ask, “How are you really doing?”
The honest answer is usually complicated.
I might be managing. I might be exhausted. I might be in pain but functional. I might look fine while my nervous system is on fire. Chronic illness teaches you to live in shades of grey, even when the world prefers black-and-white answers.
The Invisible Weight
One of the most isolating parts of MS is how invisible it can be.
There are days I use mobility aids. Days I don’t. Days I push through. Days I can’t. To the outside world, that inconsistency can look confusing—or worse, suspicious. As if illness must be constant and visible to be valid.
But the fatigue is bone-deep.
The pain doesn’t announce itself.
The cognitive fog doesn’t come with subtitles.
You learn to mask. You learn to smile. You learn to say “I’m fine” because explaining takes more energy than you have.
Grief Comes in Waves
Chronic illness involves ongoing grief.
Not just once—over and over again.
Grief for the career paths that became harder.
For the spontaneity that disappeared.
For the independence that now requires tools, planning, or help.
And the grief changes shape as you age. What hurt at 25 is different from what hurts now. The milestones look different. The comparisons creep in. You learn that acceptance isn’t a destination—it’s something you revisit again and again.
Strength Looks Different Now
For a long time, I thought strength meant pushing through no matter what.
MS taught me otherwise.
Strength is resting when your body begs you to stop.
Strength is asking for help without apologising.
Strength is adapting, even when you’re tired of being “resilient.”
There’s a quiet courage in continuing to show up to your life when your body keeps shifting the rules.
The Mental Load No One Sees
Chronic illness isn’t just physical—it’s logistical.
Medications. Appointments. Paperwork. Funding applications. Assessments. Explaining your condition again and again to new professionals. Advocating for yourself when you’re already depleted.
It’s a full-time job layered on top of whatever else you’re trying to be: a professional, a parent, a partner, a friend, a human.
And burnout doesn’t come from one bad day—it comes from never truly clocking off.
Finding Meaning in the Mess
I won’t pretend MS has been a gift.
But it has reshaped my perspective in ways I couldn’t have learned otherwise.
It’s made me more empathetic.
More attuned to other people’s quiet battles.
More intentional with my energy and my voice.
After nearly 25 years, I care less about pretending everything is fine and more about telling the truth—because honesty creates connection. And connection is what keeps you going when your body feels like it’s betraying you.
Still Here, Still Living
Living with MS is not about inspiration or pity.
It’s about reality.
It’s about continuing, adapting, grieving, laughing, advocating, and resting—sometimes all in the same day.
I am not my diagnosis.
But it is part of my story.
And after almost 25 years, I’m still here—living, learning, and choosing to take up space, even on the hard days. Especially on the hard days.
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Way to go Jess!