on being told "it's normal".
11:42
I feel like
I should probably wait with saying that for when this blog has more followers –
or any followers for that matter. But I can’t hold it in. I am ANGRY.
I came back
from yet another geneticist saying that yes, it’s probably EDS I have, but they
can’t be sure, cause I apparently only show symptoms since I was 16. And I
cried so much, cause I literally have ALL EDS symptoms, and the ignorance of
doctor’s on the topic of rare illnesses significantly holds my progress back.
So I sat my mum, and gave her a list of collagen disorder symptoms, and asked
her if I had any as a kid.
And my mum
was like “All of them. But we were said this is normal.”
And I
fucking flipped.
How harmful
the trend of saying “she’ll grow up from this” or “it’s normal for a kid” is. I
was born with two dislocated hips – a typical EDS thing for babies. My parents
were told it’s normal for a baby to be born like that. Then later, I kept
dislocating joints, I was almost always in some kind of cast or whatnot, but
what doctors said? She’s fragile built, she’s delicate, it’s normal.
I have
heart issues. I probably have POTS. I was told “it’s typical for menstruating
teenage girls”.
I have
ongoing depression since I was like 6. “Emotional female”.
So, I
scanned myself. I asked myself: “what things here you have but thought are
normal and everyone does?”
Bendy
fingers (I can do 90 degrees flip back with one of my fingers. DISGUSTING.).
Chronic headaches. Poor eyesight. Always cold. Too delicate skin getting red
easily. Legs pain (not connected to joints pain), feet pain. Muscle aches
everywhere. Exercises making me worse. Constant fatigue. Trouble breathing. Arrhythmia
and suffocating feeling when in pain without connection to actual heartbeat
issues (idk how to phrase this one, sorry if it’s wrong.).
And on. And on. And
on.
I never
told my doctors that, cause, obviously, I thought it’s not connected to my
loose joints, pain, and my chronic illness problems in general.
How many
more people like me are out there? Who never knew they can NOT BE in pain, they
can LIVE NORMALLY, that life is not that fucking hard, they’re just ill?
It’s so
fucking harmful we don’t talk more about it. That no, life is not supposed to
hurt. You can get help. IT’S NOT NORMAL TO BE HURTING.
I’m seeing
another doctor on Wednesday, and I hope this one will listen to me. And I’ll
keep looking, I’ll keep fighting for an actual diagnosis, for official
diagnosis, even though there is really no doubt here I’m an EDS baby. I’ll
fight for a wheelchair refund, fingers braces refund, wrist braces refund, SO
MANY FUCKING REFUNDS GOOOOD.
But, most
importantly. I am gonna spread awareness. Because I’ll be damned if I let other
kids and adults suffer like I did for almost 22 years.
If there
are any EDS babes like me reading this, please let me know? The more of us, the
better.
***
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