A relapse showed me that trying to ‘prove’ my MS doesn’t work

This year has been a lot for me to deal with. It’s held more grief, trauma, and growing pains for me than any year before it. And it all started with a relapse of my relapsing-remitting multiple sclerosis (RRMS) that came after nearly nine years of remission following my hematopoietic stem cell transplant. With that “re-diagnosis,” I expected fear. I expected the familiar grief. What I didn’t expect was clarity.

There’s something about being pulled back into a disease you thought you’d made peace with that forces you to look at your past with new eyes. Suddenly, entire decades of my life with MS snapped into focus, and I could finally see how many of my younger patterns weren’t resilience at all; they were survival.

I was diagnosed at 16 years old with an aggressive form of RRMS, a disease course that quickly led to blindness from optic neuritis. Even with Florida’s Division of Blind Services at my side teaching me mobility with a sight cane, some people still didn’t believe me. When you grow up in a body that people question, you learn to become the most convincing witness to your own pain.

That invalidation became the blueprint for the habit I’m still unlearning: the need to prove myself.

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The illusionist

Proving oneself is a strange habit. I wonder how many people outside the chronic illness community brace themselves before speaking, translate their pain into something palatable, or apologize before anyone reacts.

For me, proving things started as a means of protection, but it didn’t stay that way. Over the years, it became a reflex and a constant need to validate my experience before anyone else could question it. The trouble with invisible illness is that so much of what you feel has no physical proof. You can’t photograph fatigue. You can’t hold pain up to the light. You can’t print out cognitive fog. So you start anticipating reactions before they happen. You smooth your expression. You rehearse explanations. You shrink your needs. And after a while, proving becomes muscle memory and easier than trusting yourself.

I’ve written about how life with MS taught me to become a practiced illusionist; proving is the behavior that builds these illusions. They’re designed for safety when being disbelieved taught me that my unfiltered truth was too risky. Once people accept the illusion that you’re strong, resilient, adaptable — that you’re “fine” — the pressure is on to maintain it. The cycle for me then became invalidated pain leading to proving, proving creating an illusion of wellness, the illusion creating pressure to preserve it, and that pressure pushing me into more proving.

Living without illusion

But what I didn’t recognize until this year is that when proving is the default, processing doesn’t stand a chance. You become so busy making your experience digestible that you stop letting yourself feel it in real time. You skip straight to the explanation, the justification, the neat summary. You narrate your pain instead of acknowledging it. In trying to make your symptoms believable to others, you become a stranger to your own body.

This year stripped away any option I had to keep proving. Relapse combined with trauma, grief, and overwhelming change does that. The speed at which my health and life unraveled made it impossible to maintain the illusion that I was holding everything together. My body demanded honesty, and I could either listen or break. Processing wasn’t a choice; it was the only path left once proving became too heavy to carry.

And processing, I’ve learned, feels nothing like proving. It’s raw, unedited, and sometimes inconvenient. It doesn’t wait for the right time or the right words. It doesn’t ask if anyone else will understand. Processing asks you to sit with the truth of what’s happening inside you, without translating it, shrinking it, or rehearsing a justification. It means naming what hurts without packaging it to be palatable.

If proving felt “safe” all these years, processing feels exposed. There’s no illusion to hide behind anymore and no polished version of “I’m fine” to slip into when the truth is messier. That honesty is both freeing and terrifying; freeing because I’m no longer twisting myself into the most believable version of my pain, and terrifying because without the illusion, I’m visible in a way I haven’t been since I was a teenager.

Proving forced me to anticipate how I’d be perceived, while illusion forced me to forget what I actually feel. Together, they created a split between an outer self that performed resilience and an inner self that’s never been allowed to simply exist.

The takeaway is that, hopefully for once and for all, I’ve learned that my body doesn’t need a courtroom; it needs compassion. My life doesn’t need an explanation; it needs presence. For the first time, I’m letting myself live without any illusion. And in that honesty, I’m starting to recognize myself — with the hope that I never have to prove her into existence again.

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.