When the pain started? Impossible, I can’t remember a day without it.
I know.
The day of my diagnosis. My doctor said you just diagnosed yourself, you’ve done great
advocating for yourself.
My ears rang, I could hear my heartbeat thump loud all the endless nights, all the unanswered
questions and prayers. The room started spinning. We got answers to this madness.
Fighting for a diagnosis, fighting for me to be seen as something else than Postpartum
depression.
I was depressed, from constantly trying to convince everyone I’m not okay.
It may look like I am but I’m not. I’m done pretending.
For years I’ve been in pain. Exhausted from existing because bare minimum can cause days of
unmovable pain.
How do you make people understand what they don’t want to? You don’t, you can't.
The curse of looking okay while I die alive. Unable to live the life I wanted.
Everything has been affected my marriage, my baby and most importantly me.
Me: "I was just diagnosed with ...
Cardiologist: "You dont look like you have it. Do you know what it is?"
Wow if it wasn't the third, forth, and fifth doctor to tell me this after receiving the diagnosis.
As if my battle to get diagnosed, and my daily battle to exist wasn't enough. Brushed off just like
that even with a medical diagnosis.
My life has drastically changed. I was diagnosed with Hypermobile Elhers danlos.
Not only was I diagnosed with a chronic condition. I was never apologized for the constant
medical gaslighting.
"It's normal for you to feel like this when you don't have help, and as a new mom."
How normal is it to have a rare disease and get constantly told to lose weight? Told it's
depression, told it was normal to be uncomfortable in your own skin.
Tired of trying to convince others I'm not feeling well just cause they don't see me in crutches or
a wheelchair.
If you see me, hug me. I'm not okay.
I won't pretend to be okay no more.
I can't hold my baby because the pain is too much. Grieving the mom I could’ve been.
She's learning to walk already and I can't help because of my pain. I do what I can, because I
don't know when It will be the last time I'll be able to.
So even if it hurts, even if it's the last thing I'll do. I'm going to do it because I don't have the
option of being seen.
The worst pain has been advocating for myself and being brushed off feeling like I'm crazy.
I know I am, I've been knowing. I've always been too much, the odd one out. Because I learned
young what pain was. I lived every single day to the fullest because of it.
My days now consist of sleepless nights. Worrying for my daughter, what kind of life I’ll be able
to provide. I’m not able to work, I’m not able to move at times. Will she have to experience this
because of me?
I joke I’m a 96 year old trapped in a 27 year old body. But I’m not laughing. It’s more of a cry for
help. To be understood, to be listened to, to be acknowledged.
I’m a zebra not a circus clown.
I shouldn’t have to contort at your command for you to believe me.
--Brenda S., Adult