There’s a fear I carry that I rarely talk about.
It’s quiet, persistent, and always lurking in the background.
It doesn’t show up in the Instagram highlights or in my keynote speeches.
It shows up in the late-night thoughts, in the things I don’t say when people ask how I’m really doing.
It’s the fear of becoming a burden.
A Fear Many of Us Know… But Don’t Say Out Loud
Living with Spinal Muscular Atrophy (SMA) has always meant navigating life differently. My body has always required more help than most — and for the most part, I’ve made peace with that.
But lately… that peace has wobbled.
As the disease progresses, I find myself needing more support. Tasks that used to take me five minutes now take twenty. Some things I used to manage alone are now impossible. And it’s happening just as I thought I’d be entering the chapter of life where I’d be in control — fully owning my independence, chasing bigger dreams, and giving more than I take.
But SMA doesn’t work like that.
It doesn’t wait for your ideal timeline.
“You’re So Brave” — But I’m Also Human
I often feel like I have to be “the brave one.” The strong, smiling, inspirational one. And I am those things — but I’m also human.
And humans get tired.
Humans have fears.
And humans — especially those with disabilities — often feel the weight of needing others more than we’d like.
So yes, sometimes I wonder:
“Am I too much?”
“Will people get tired of helping me?”
“What happens when I lose more control?”
This Isn’t Just My Story — It’s Everyone’s
Here’s the thing:
This fear doesn’t only belong to disabled people.
It’s the fear of a new mom who feels overwhelmed.
The fear of a caregiver who’s exhausted.
The fear of someone facing mental illness who thinks their emotions are “too much.”
The fear of an aging parent who doesn’t want to “be a problem.”
Everyone, in some way, knows what it feels like to worry that their needs make them a burden.
I’ve had to do a lot of inner work to challenge that thought.
To remind myself — and maybe to remind you, too — that:
🖤 Asking for help is not weakness.
🖤 Your needs are valid.
🖤 You are not a burden. You are a person.
SMA: What It Is and Why It Matters
Spinal Muscular Atrophy is a rare genetic condition that affects 1 in every 10,000 people. It weakens muscles over time and impacts basic movement, breathing, and swallowing. There’s no cure, only treatment to slow progression.
But the part that’s often invisible? The emotional toll.
The silent grief. The fear of losing more. The deep ache of dependency.
These feelings are real — and they matter just as much as the physical symptoms.
My Book: Finding My Feet
I unpack this fear more deeply in my book, Finding My Feet.
It’s one of the hardest — but most important — topics I wrote about.
Because this isn’t just a story about disability. It’s a story about identity, vulnerability, resilience, and owning your truth even when it hurts.
If you’ve ever felt like your needs made you “too much,” I wrote this for you.
If you’ve ever felt like you’re carrying something alone, I see you.
And I hope my journey reminds you that you’re not alone — and you are never a burden.
Let’s Talk About It
If this resonates with you, I encourage you to start the conversation. Share this blog. Open up to someone. Buy the book. Bring your fears into the light.
Because when we stop hiding our burdens, we start healing.
And healing — even in the smallest way — is the most courageous thing we can do.
Get your copy of Finding My Feet
Follow me for more real stories and reflections: @KmotivationSA
