I’ve spent a lifetime learning how to endure.
Endure the pain that locks my joints, edure the judgment that follows when I walk without a cane, then use one moments or days later.
Endure the silence that creeps in after I advocate for myself or my daughter.
Endure the way people smile at me with pity or worse with suspicion.
I’ve heard whispers and accusations since I was a child. That I was faking and that I wanted attention. I was lazy and I was too sensitive or depressed. That I needed to pull up my boot straps and push through, and of course I believed them.
I internalized the idea that my pain was too much for people to care about, that my worth was tied to how well I could perform as being "normal" and how much my "normal" body could do. So I learned to hide my pain and I learned to shrink myself in order to be accepted and fit in.
But as I grew pain has taught me how to listen deeper. Becoming a mother has taught me how to fight louder and surviving has taught me I don’t owe anyone proof of my pain.
I’m disabled and a mother to a fierce, magical little girl. She has epilepsy, kidney disease, and the most radiant heart and light I’ve ever known. She is the reason I rise when I’d rather disappear. She is the reason I advocate even when my voice shakes and she is the reason I stay soft in a world that hardens people like us.
Raising her with a body that betrays me daily is a lesson in adaptation. Every task from bathing her, making meals or getting out the door requires calculations most people never think about. Some days I can pass as functional, and some days I can barely lift my arms, but every day I am her safe place.
That’s the most important job I’ll ever have and one I cherish daily.
We live in a world that asks disabled people to justify our existence and a world where medical care is rationed. Where accessibility is treated like charity and not a right and where even family can become a battlefield of misunderstanding and cruelty. I know what it feels like to be gaslit by loved ones and I know the heartbreak of being tolerated instead of embraced.
I’ve felt invisible at family gatherings and I’ve smiled through tears so my daughter wouldn’t see how shattered I was.
But I’m not here to center the pain of being misunderstood, I’m here to name it so I can set it down.
I’ve learned that my voice is sacred and that rest is resistance. That saying “no” is necessary and protecting my peace is a priority for me. I’ve also learned that boundaries don’t make me mean, they set me free and demand the way I deserve to be treated.
If you’ve ever been made to feel like a burden, you're not, if you’ve ever mourned the loss of people who chose judgment over love, let them go. And if you’re building a life inside limitations please know that beauty grows there too.
I write to remember who I am and who I desire to become.
I write so my daughter can see her own worth and so she does not shrink herself, but blooms over and over again.
I write so others don’t have to feel as alone as I did.
Disability does shape how I move through the world, with tenderness, awareness and empathy.
If my story resonates with you, please know that you are worthy, you are not a fraud and you don’t have become small to be loved.
You don’t owe anyone your pain, but you can turn it into something powerful, whatever that means for you.
All my love, Mighty warriors 🤍
#Disability #JuvenileRheumatoidArthritis #ChronicFatigue #Lupus #MentalHealth
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