Chronic Fatigue

I want to crawl out of my body and find another. One that likes me. I want to feel like I am me. I want a mind that isn't a stone with cracks barley large enough for a thought to squeeze through. I want to be free.

Had to work anyway. It is what it is folks. Push through and kick @$$ anyway! #RelapsingPolychondritis #ChronicFatigue #ChronicPain

I’m so tired today and had to go to work. It is what it is folks! We push through and kick ass anyway. #RelapsingPolychondritis #ChronicFatigue #ChronicPain

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

Trigger warning: This poem contains depictions of past abuse and trauma. If you are sensitive to this line of topic, please do not read further then thie message. Your mental health is more important than the poems.

Hope you enjoy.....

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It is hard

Being my authentic self

Pressured to keep bad company

Despite affecting my mental health

What can I do?

No matter how

Hard I try

You'll always

Accuse me telling a lie

This is ridiculous

It feels as if

I am in a circus

The goal-post always changes

Without my acknowledgment

It is because I am “defective”

with “poor judgement”?

You insinuate that I cannot do

Anything without proof

But act differently towards others

And not aloof

Double standards reveals

True colours of an individual

Putting on a show

Or a facade

Yet, when I disagree

Your resentment would grow

Like a mustard tree

Taller than most houses as it seems

Deeply rooted onto the ground

Similar to my broken self-esteem

There are days

Where I cannot go on

And pretend anymore

Wearing a mask to please others

But what is this all for?

I desire to be seen

As clear as a crystal ball

Not to be treated poorly

Fate can be truly abysmal

My other siblings

Are treated with respect

One can even speak German

But with me?

I am seen as less

Than a vermin.

Being infantilized

Is one of the worst

Feeling ever

A disability

Does not suggest

you are less clever

Yet, here you are

With hatred and ableism

It is all you have

Might are well

Abuse me years ago

Does that ring a bell?

I have been battered,

Punched, spat and choked

By a loved one

But everyone find this to be a joke

Typical

Why am I not surprised anymore?

It is hard

Finding my voice through expression

As I am sinking in deep depression

When given a chance

To form words

I am ignored

Like a flock of mocking birds

A wise man told

Me this once

Blood is not thicker the

Water he said

Trusting the wrong people

Is what most dread

Sometimes I wish

I was never born

In a world

Where outcast given a

cold-shoulder or scorned

#MentalHealth #AutismSpectrumDisorder #Depression #Loneliness #Anxiety #MightyPoets #Selfcare #Trauma #ChronicFatigue #Neurodiversity #SocialAnxiety #SelfharmRecovery #Grief