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the Undiagnosed Symptoms of America

After 10+ years of bloodwork, doctors appointments, so many different specialists... it took the burden of overflow of paperwork during the COVID-19 pandemic and my bloodwork being sent to the Mayo Clinic to get my diagnosis of APS and SLE Lupus. Just in the nick of time too.. since I had two lungs full of blood clots, not due to COVID-19, but APS and lack of cardio after my spinal fusion surgery..

Have we talked about my spinal fusion surgery? I most likely had scoliosis my entire life, but somehow, no doctor ever noticed. I guess because I #Dontlooksick . But after 10 years of summer and High School swimming and being the school's star distance swimmer (32 laps per meet), my S-curve scoliosis was an angry beast. However I wasn't diagnosed until I was 25, and at that time I was diagnosed with S-curve scoliosis, premature degenerative disc disease, and I forget how many herniated discs, etc. Not that many orthopedists or anyone else for that matter intended on helping me. Being in my 20s and with sky-rocketing, quality-of-life decimating pain... obviously I "just wanted drugs". Eventually (2018, I think) I saw a chiropractor who took an in office x-ray, pointed at my lower spine and said "you have several fractured vertebrae". But when she sent out her report... "nothing remarkable". I was confused, heartbroken, devastated... why was she lying ?! I still don't know. But I had my spinal fusion at l4-l5-s1 on January 13th, 2020.

At 34, I've been diagnosed with ADHD, and only now do I realize I should've been diagnosed with ADHD no later than sophomore year of High School. I have essentially every symptom, even more so back then... like how I didn't own a single sweatshirt thats cuffs hadn't been chewed to frays, not a pen that didn't look like it had been mauled by a bear, or a notebook that contained a single note related to the class it was meant for - song lyrics though, I had written out all my favorite songs, word for word. I also couldn't sit still in a chair - which probably also had a lot to do with my scoliosis. I wasn't a "bad" student but I was occasionally disruptive and I can recite the "so much potential" speeches I was always getting in my sleep.

I lay here today (laying in bed, due to some uncomfortable physical pains I'm dealing with and a vomiting bout last night), wondering how much they truly cared about my potential. If they had... where was the support? From my teachers, my coach, my counselor, my doctors? None of them ever did a thing for me, except hint that if I wasn't always so busy messing up, I could really be something. But I was the child and they were the adults, if I was messing up so badly, did they not have any responsibility to set me on a better path? To point me in the right direction? My whole life could've been different if I'd have had even the slightest bit of support.

The counselor, the nurses, the doctors, how do they fail so badly? How do so many of us slip through the cracks?

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A poem called The Mask Of Pain by Mica Warsop

Feeling weary & very weak,
I smile so I don't look so bleak.

No one knows the amount
of pain I feel,
I know if they did,
they themselves couldn't deal.

I stay strong & try not to cry,
all the while asking God why.
why was I designed to have a painful,
disabled life?
God replies
"Because you were designed
with awareness in mind...
You're spirit can handle it,
you're strong & you're kind.
Don't hide your pain,
talk about it with pride"

By Mica Warsop
#ChronicPain #Disability #mobility #InvisibleIllness #Undiagnosed #FunctionalNeurologicalDisorder #RareDisorder #raregenetics #invisiblesymptoms #Ableism #misundersoodillness #InvisibleDisability #lifelongconditions #Dontlooksick

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