Getting diagnosed with MS didn’t just change my health.
It changed my expectations for my life.
The shift was gradual and sudden all at the same time.
Overnight, I had to start moving differently—medications, doctor’s visits, monitoring everything. But I didn’t immediately change who I was.
I still had an active social life.
I still competed in powerlifting.
I still showed up the same way.
At least, at first.
The Version of Me I Thought I’d Be
When I was first diagnosed, I had only been powerlifting for about three years—but I was obsessed. It had become a huge part of my identity.
I pushed through workouts without consequences.
I had what felt like unlimited energy.
Three max-effort squats, bench, and deadlifts in a single meet? No problem.
I was in my peak powerlifting era—and I was killing it.
And then came the medications.
The side effects lists.
The appointments.
The reality check.
I didn’t lose that version of myself all at once.
I lost her slowly.
Little by little.
She still shows up sometimes—on really good days. But even then, it comes with a cost.
And there’s always that quiet thought in the background:
Who would I be if MS hadn’t found me during this chapter of my life?
In the words of Toby Keith:
“I’m not as good as I once was, but I’m as good once as I ever was.”
My Body Changing
My body didn’t change overnight—but it changed in ways I couldn’t ignore.
The first medication I was prescribed took a serious toll on my immune system. And at the time, my doctors weren’t monitoring it the way they should have been.
When I switched neurologists, she told me my immune cell count was lower than an HIV patient’s.
And this was during the height of COVID.
She immediately took me off that medication. What followed was weekly lab work, waiting and hoping my immune system would recover.
Then came infusions.
At first, they were rough. I had allergic reactions and had to be pumped full of steroids and antihistamines—which came with their own set of side effects.
Everything felt unfamiliar.
I felt like I was living in someone else’s body.
Not the one that could back squat 500 pounds.
And somewhere in all of that, I stopped trusting my body the way I used to.
What’s wild is that even before my diagnosis, I had symptoms. Weird things would happen—but I brushed them off. I pushed through.
Part of that came from years of medical gaslighting. Not being believed.
Eventually, I started gaslighting myself.
Telling myself I was fine—until I wasn’t.
I’m still strong. I still lift.
But it doesn’t look the same. It doesn’t feel the same.
And that’s something I’ve had to come to terms with.
Spontaneity
One of the biggest things I’ve had to grieve is my spontaneity.
I love adventure.
That version of me would book a random Friday night flight to Orlando for the weekend—or meet up with a friend for dinner and drinks without a second thought.
My soul still craves that.
But my body requires planning.
I try to be spontaneous when I can—but even that requires preparation. I have to make sure I have the energy reserve to follow through.
And there are some things I just don’t do anymore.
I don’t drive long distances by myself.
I deal with bouts of dizziness and vestibular migraines, and it’s not worth the risk. The anxiety alone—wondering if something might hit while I’m driving—is enough.
So I’ve had to grieve the version of me who would hop in the car and drive two hours for a random weekend trip.
That version of me doesn’t exist anymore.
Time & Energy
Grieving time has been one of the hardest parts.
I get frustrated when I can’t spend my time the way I want to—especially because I have fewer “good” days than I used to.
When I feel good, I want to live. I want to enjoy it.
I don’t want to spend that time at doctor’s appointments or fulfilling obligations that drain me.
Because of that, I’ve had to set hard boundaries.
With family.
With friends.
With expectations.
I can’t always do last-minute plans. I’ve had to learn how to say no—even to people I love.
And honestly? Saying no has saved me from a lot of resentment.
It’s easier to set clear boundaries than to silently feel like my time and energy are being taken from me.
I already lose enough of both to fatigue and recovery.
I’m not willing to lose more to things—or people—that don’t respect it.
The Identity Shift
More than anything, I’ve had to shift my identity.
From:
“I can push through anything.”
To:
“I’m strong—but I have limits.”
And that’s not an easy shift to make.
If you’ve ever tried to quit something like smoking or vaping, you know it’s not just about stopping the habit. It’s about changing how you see yourself.
From “I’m a smoker” to “I’m not a smoker.”
Until that identity shifts, the habit usually wins.
Chronic illness forces that kind of identity shift—but without your permission.
And it comes with grief.
Because I didn’t just lose energy.
I didn’t just lose spontaneity.
I didn’t just lose endurance.
I lost the illusion that I was invincible.
I had what felt like an existential midlife crisis in my thirties.
And I’m just now starting to come out on the other side of it.
Grief doesn’t always look like sadness.
Sometimes, it looks like adjustment.
And learning how to move through life as someone new.
XO,
Samantha Jo