Fatigue. The unending anxiety.
Living a normal life is all I’ve ever wanted.
But the truth is, chronic illness and MS is always there to remind me that I am anything but normal.
The Invisible Symptoms
Let’s talk about fatigue.
One of the most frustrating things I hear is:
“Wow, I’m tired all the time too. I wonder if I have MS.”
Fatigue is more than just being tired. It’s bone-deep exhaustion that isn’t cured with a nap or a good night’s sleep. I can’t throw back an energy drink or slam pre-workout and suddenly feel fine.
It feels like moving through mud—like quicksand. And when I wake up in the morning, I know I’ve slept… but it feels like I haven’t slept in months.
And with chronic fatigue comes chronic brain fog.
I forget words. I lose my train of thought mid-sentence. Sometimes I forget what I’m doing entirely.
One time, I was house and dog sitting for my parents—something I’ve done a dozen times. I know their alarm system. I know the routine.
But one morning, the dogs wanted out, and I walked straight to the back door and opened it without disarming the alarm.
Instant chaos.
The alarm started blaring. The dogs were howling. I was frantically trying to disarm it, but my brain just… wasn’t working. Then I heard sirens in the distance, and I was already running late for work.
It took multiple phone calls and a few very disgruntled conversations to get everything sorted out.
All because my brain was foggy.
Now add sensory issues into that mix, and it becomes overwhelming fast.
That alarm didn’t just sound loud—it sounded like nuclear sirens. The dogs barking on top of it made everything feel distorted, like I was stuck in a tunnel. My head was spinning, pounding. I was running in and out of the house, which triggered my temperature intolerance.
It was chaos.
And the wild part?
I handled it. Maybe a little grumpily—but on the outside, I looked like a normal person dealing with a chaotic situation.
But just because I look fine doesn’t mean my body is cooperating.
What you see as “handling it” is my body internally screaming for relief.
The Mental Load
Constant Awareness
Another part of chronic illness is the mental burden.
I am constantly aware of everything happening in my body.
Every pain. Every random sensation. Every “off” feeling.
What a healthy person might brush off as a simple headache can send me into a spiral. Even when I try to logic my way through it, there’s always that underlying fear:
Is this something more? Is this a relapse?
It makes it hard to trust my own intuition.
Planning Everything Around Energy
Before my diagnosis, I was extremely spontaneous.
Now? Everything requires planning.
I still try to be spontaneous—but now it comes with questions:
- Can I go to dinner and the gym?
- Can I do girls’ night and brunch the next day?
- If I do this today… what will it cost me tomorrow?
My internal dialogue is constant.
Can I handle this?
Am I going to pay for this later?
It’s a balancing act between wanting to live a full, happy life and making sure I don’t push myself into a flare.
Some days it comes down to this:
Do I go shopping today, or do I do laundry?
There’s rarely enough energy for both.
The Push & Crash Cycle
After reading this, you’re probably thinking:
“Does she ever have a good day?”
The answer is yes.
I do have really good days.
Most days sit somewhere in the middle—balanced on the edge of “okay,” just hoping they don’t tip into bad.
But on the good days?
I go all in.
If I wake up feeling good and go to bed still feeling good, I consider that a win. Those are the days I live for. And I’m always trying to recreate whatever made that day possible.
But I do pay for it.
The MS might stay quiet for a few days—but when it comes back, it collects.
I’ve had to cancel plans more times than I can count. And the guilt that comes with that is heavy.
I’m incredibly lucky to have people in my life who want to spend time with me. So when I cancel, or change plans last minute, it eats at me.
And instead of resting, I’m sitting there feeling guilty.
It becomes this constant internal battle:
Letting people down.
Letting myself down.
And still wanting to live life to the fullest.
The “You Don’t Look Sick” Problem
I’ve lost count of how many times I’ve explained my symptoms, only to hear:
“But you look great!”
And I know it’s meant as a compliment. I take it that way.
But it’s also a double-edged sword.
We all know someone whose aunt’s friend’s mom’s cousin “has MS and is doing great.” And that’s amazing—we love an MS success story.
But if you looked at my social media, especially my lifting content, you’d probably say the same thing about me.
And that’s the hard part.
Being sick—but not looking sick.
Feeling like you constantly have to prove that you are.
At the same time, I don’t want to be treated like I’m fragile. I don’t want to be handled like I might break.
I want to be seen as normal. As capable. As strong.
But I also want to be believed when I say:
I don’t feel good.
I’m not okay today.
Both of those things exist at the same time.
I do my best to show up as a normal, healthy person.
But you’re not seeing the full picture.
And that’s kind of the point.
XO,
Samantha Jo