It Started Earlier Than I Realized
For most of my life, like as far back into my childhood as I can remember, my body has done weird stuff.
I remember getting ready for a formal event as a teenager and telling my mom how tired I was. I went to lay my head down on the bathroom counter, but I passed out and hit my head instead.
Another time, I was walking down the stairs. The same stairs I had walked down multiple times a day for my entire childhood. And I tripped and went head over heels all the way to the bottom. My poor mom heard the whole thing and ran to help me. I ended up kicking her in the face and breaking her glasses.
There was also a time when my feet went completely numb. That numbness slowly crawled up my legs and lasted for about three weeks before it finally went away.
What’s crazy is no one seemed worried enough about these things to run more tests.
The Things I Learned to Ignore
To be fair, I had been sick my whole life.
I was hospitalized multiple times as a baby because of asthma. Being sick was just part of who I was.
So when weird things happened, they didn’t feel like red flags. They just felt like… me.
As I got older, it didn’t stop.
The leg numbness came back more than once. I was always exhausted. Not just tired, but the kind of fatigue that takes over your whole body. I would come home from work, fall asleep, wake up just long enough to eat dinner, and then go right back to bed.
Looking back, I honestly don’t know how I managed to do everything I did during that time.
Because the truth is, I wasn’t thriving. I was barely keeping up.
When It Got Hard to Explain Away
At one point, I was fired from a job because I had to miss so much work for doctor’s appointments.
The problem was, I didn’t have answers. No diagnosis, nothing concrete. And the people at that job didn’t have much empathy for someone who couldn’t push through long days nonstop.
I was sleeping my life away, and every time I tried to get help, I heard the same things.
Stress. Hormones. Anxiety.
You know, the usual things women get told when they’re trying to figure out what’s wrong with their own body.
After a while, you start to believe it.
The Symptom That Changed Everything
It wasn’t until the middle of the pandemic that something finally felt different.
I woke up one day with double vision.
And the crazy part is, I didn’t even take it seriously at first.
After being brushed off so many times, I had learned to brush myself off too. I assumed it would go away like everything else always had.
It wasn’t until I made a post on social media asking if anyone else had experienced double vision that I paused and thought, maybe something isn’t right.
Even then, I didn’t go straight to the emergency room. I went to an eye doctor first. They took one look at me and told me I needed to go to the ER.
This was May of 2020. Hospitals were overwhelmed and understaffed. I waited for twelve hours and was never even seen.
Meanwhile, things were getting worse.
My double vision wouldn’t go away. The right side of my face started going numb and felt almost paralyzed. I had burning sensations all over my head.
And somehow, I was still going to work.
I had to wear an eye patch just to drive, because my vision was fine out of each eye, but my eyes wouldn’t work together.
Finally Being Heard
Luckily, I have a primary care doctor who actually listens to me.
She saw me as soon as she could and ordered MRIs.
Those MRIs showed demyelination consistent with Multiple Sclerosis.
Just like that, there was finally an answer.
What I Wish I Knew Sooner
It’s strange to look back now and realize how long my body had been trying to tell me something was wrong.
The signs were there.
I just didn’t know how to connect them. And honestly, I didn’t think anyone else would either.
When you’re dismissed enough times, you start to question yourself. You start to minimize things. You convince yourself it’s not that serious.
So you keep going.
You keep pushing.
You keep ignoring what your body is trying to say.
It wasn’t just that no one else took it seriously.
Eventually, I didn’t either.
And that’s the part I’m still learning to forgive.
If This Sounds Familiar
If you’ve ever felt like something was off in your body but couldn’t get anyone to really listen, you’re not alone.
I mean that.
I’d genuinely love to hear your experience.
XO,
Samantha Jo