What Independence Really Means When You Live With a Disability

For a long time, I thought being independent meant doing everything on my own, no help, no asking, no leaning on others. Society told me that’s what strength looked like. That’s what success looked like. That’s what it meant to be a strong Black woman, an entrepreneur, and a leader.

But when I was diagnosed with Limb-Girdle Muscular Dystrophy, everything I thought I knew about independence began to shift.

I started to lose the strength in my legs and upper body. Simple tasks like getting out of bed, putting on clothes, or walking from one room to the next suddenly felt like climbing a mountain. At first, I pushed through. I hid my struggles, masked my pain, and told myself I could still do it all. Asking for help? That felt like failure.

But the truth is: the day I finally asked for help was the day I took my power back.

Redefining Independence
What I’ve come to realize is this: independence isn’t about doing it alone, it’s about having the freedom to live life on your terms, with the right support in place. It’s about choice. It’s about dignity. It’s about knowing what you need and not being afraid to claim it.

When I started working with PCA (Personal Care Assistant) services, it was a game-changer. Not just physically, but emotionally. I had to learn to trust someone in my space. I had to let go of the fear of being a “burden.” I had to stop judging myself for needing help.

And guess what? I became more independent.
Why? Because now, with the right support, I can run my businesses, travel, host events, attend meetings, and do what I love, without exhausting myself just trying to get through the basics of the day.

Let’s Get Real: The Emotional Side
No one really prepares you for the emotional side of needing daily support. You grieve the body you used to have. You question your self-worth. You wonder if people will treat you differently. These feelings are real, and they are valid.

But over time, I learned to flip the script. I began to see my care team as part of my empowerment, not a sign of weakness. I began to understand that asking for help is actually one of the bravest things you can do. It takes strength to be vulnerable. It takes strength to advocate for yourself. It takes strength to say, “I deserve support.”

Practical Tips for Navigating PCA Services
If you’re considering PCA services or just starting the process, here are a few tips I wish I had known early on:

1. Start with your doctor or social worker. They can guide you to the right state-funded programs or agencies.
2. Be specific about your needs. The more detailed you are about your daily routine and physical challenges, the better match you’ll find.
3. Interview potential PCAs like you’re hiring for a business, because you are. Your care is a priority, and you deserve someone who respects your boundaries, values, and schedule.
   4. Create a flexible care plan. Life with a disability isn’t always predictable. It’s okay to adjust and rework what support looks like as your needs evolve.
   5. Don’t be afraid to speak up. If something doesn’t feel right, advocate for yourself. You are your best spokesperson.
   
   You’re Not Alone ,If you’re navigating disability, chronic illness, or any condition that makes daily living harder, you’re not alone. And you don’t have to do it all alone to prove your worth.

I want you to know this: you are still strong. You are still capable. You are still independent, even when you need help.

In fact, that kind of strength, the kind that allows love, support, and care to enter your life, is what makes you chronically rockin’.

Keep going,
Keisha G

P.S. If you or someone you know is navigating the PCA process and needs guidance, I’m here to help. Feel free to reach out or share this post with others. Let’s keep building a community where no one feels ashamed of needing help, and everyone feels empowered to live fully.