Let me start by saying my whole family has AS.
It’s an exaggeration, but it’s also not.
I am the third generation in a row with it.
I firmly believe that knowing what is happening to me is a blessing.
But with modern medicine’s view of our disease. It’s also a curse.
That being said I still haven’t gotten to ANY specialist.
I desperately need to but my disabilities are keeping me from it. I need an advocate, and a support system that I don’t have.
My story is long.
People always find interest in it.
My life wasn’t normal.
I still am trying to figure out what normal is.
I am going to try to keep this short.
It’s always a problem knowing where to start my story.
My grandmother has borderline personality disorder. She also has AS. She suffered extreme abuse as a child from her father. It extended to sexual abuse as well. She had to be strong and take all of the abuse to help her sister. My nana. My nana got rheumatic fever when she was 9. She was bedridden for a year. And she was not abused during that year. My grandmother hardened to protect my nana.
It turned out to be a shell that never stopped thickening. Like a pokemon using harden.
She developed a need for control.
A hate for herself.
And a lot of pain she refuses to show anyone.
That includes her ankylosing sponylitis.
She hides it. She hides it like she hid her pregnancy at Christian college with my mother. Starving herself. My mother was born 5 lbs. Full term.
My grandmother lost her virginity and got pregnant with my mother.
I should mention my grandmother is a triple Capricorn.
She’s obsessed with success.
And my mother ruined it by even being conceived.
She lorded over my mother as her own personal scapegoat.
She annihilated my mom.
She’s cracked mentally. She was recently diagnosed with delusional disorder. She has had PTSD my whole life.
So have I.
Our family has a way of doing that.
Fracturing each other’s psyche.
It hurts us physically, our PTSD.
So. My grandmother has a sick need to control my mother.
And I forgot to mention. But my nana, the one who was bedridden for a year at 9, developed a need to gain attention from sickness. It protected her from abuse at a young age and her personality formed wrong.
At 28 years old my mother got pregnant with my sister.
My grandmother drove her to abortion clinics. Demanding she get one.
Then she kicked her out of the family when she refused.
At 28 she still felt like she was entitled to power over her daughter.
That never changed.
She took my sister and I away.
We needed to be taken away.
But she didn’t do it because of that.
She used us for control and played games with my mother from the get go.
She dangled us in front of my mother our whole lives.
She wasn’t allowed to have friends, or a boyfriend under threat of never getting to see us again.
We saw our mother crack.
Living isolated and hurting.
Watching 4 televisions at one time.
I can’t imagine what she went through.
It’s my worst fear.
One that I don’t think will pass until until my grandmother is gone.
For now. I’m 2000 miles away from her. And so is my mother.
Even children get older.
My mother’s case of AS is our family’s worst so far.
I have known of her disease my whole life, as it was discovered when my mother attempted a natural birth with my sister, but her hips had already achieved total fusion by 28.
I blame my grandmother for that.
I know it’s not totally logical,
But I do.
And even if she isn’t to blame.
She still deserves the blame.
Because even if she didn’t cause it,
She tormented her her whole life while she was experiencing it.
She did the same to me.
This is where I’ll start my story.
Sorry the backstory is long.
I don’t ever remember a time when I didn’t have this spine pain.
I remember it always being there.
I still did cartwheels and stuff
But by 13 I lost the ability to do those really anymore.
Okay. So from the beginning.
Let me start by telling you that I don’t have an official diagnosis.
I am confirmed HLA B27 Positive.
I’m 22. And my symptoms are keeping me from getting to the doctor
I was raised by my nana.
She is the one with Muchausen byproxy.
She took me and used me for attention.
She didn’t watch me.
I was 13 months old when she got me
She had taught me to swallow pills by 2.
She gave me sudafed every night.
It jacked me up
Made me pass out right before school started
Then she’d scream at me as I was having problems waking up.
Then she’d get attention from the fact that I couldn’t wake up for school.
Like I was being a bad kid or something.
I was being drugged.
I woke up nauseous every day
I’d vomit as she screamed at me.
While on the phone.
Talking about what a hypochondriac I am.
She’s a bitch.
But I love her.
She’d dead now
And I’d do anything to bring her back
But I know she’s not healthy for me.
She thrived on that codependence.
Luckily she also taught me what codependence is.
So I can’t be too mad.
But I am.
I am because I had so many medical symptoms as a kid I was mocked for.
Called a hypochondriac for.
They only got worse.
Now she’s gone, I’m alone and the symptoms have gotten the best of me.
They are to great. And there are too many. And I can’t talk about them without crying.
Recently I realized I’ve been dissociating.
I dissociate from my medical symptoms.
Then I forget them once they pass.
I have PTSD from my doctor’s being told I was a hypochondriac.
I was never listened to.
And I slipped through the cracks.
Paperwork is a huge trigger for me from a the new doctors I was dragged to.
I feel undeserving to be honest because I don’t have a diagnosis.
But I’ve seen this disease.
And I know it.
I know I have it.
And it sucks
It’s great knowing. Because you don’t feel as crazy. Because you understand it.
It’s also a huge curse knowing that I have it.
Idk if I got my message of my story across.
My childhood swims in my head causing flashbacks anytime I describe my pain.
Just if you take anything from this story.
Please let it be to not let your pain ever make you harden.
Do not let it make you see others pain as invalid.
Do not take your pain out on weaker people than you.
It is better to be weak than to be hard.
And if you see a child like me.
Because I was waiting for someone to report it my whole life but I didn’t know what was happening.
I was told I wouldn’t be believed.
I was moved every year
So no one ever caught on.
If you see a child like me.
Please help them.
Oregon, United States of America