05/01/2021
⭐This is me⭐
Not that long ago if you asked me how I was doing I would respond with a very statement. Most likely something completely far away from the truth. I'd tell you how I was doing really well, thinking positively and nailing all of my goals without any consequences. 😅
However, the reality was much different than that.🙊 Since the beginning of 2020 my symptoms were getting worse with every day. I assumed that since my mom was going through stage 4 cancer with me in the front lines, it made sense why I was stressed out and in turn had more pain... because y'all know how chronically ill patients are constantly told their pain is a psychological manifestation of how they see the world. 🤦♀️
I brushed it off as long as I could until I couldn't anymore.
⭐ Until standing for more than 10min made my heart go 160 beats per minute.
⭐ Until brushing my hair made my vertebrae pop up causing my arms to go numb.
⭐ Until editing a fun, short gallery made my ribs subluxate.
⭐ Until the physical therapy that was meant to strengthen my joints, subluxated both my knees instead.
⭐ Until taking a quick shower made me faint.
⭐ Until I learned that the "normal" amount of period pain "for a dark girl" is actually a rare genetic, auto inflammatory disease that brings me closer to kidney failure and infertility every time.
I spent my entire life looking for answers.
I spent my childhood and young adulthood in hospitals, doctor visits, inpatient facilities, physical therapy, bed bound... always in agony but nobody was paying attention.
Because:
"You are too young to be sick"
"You don't look sick"
"Being disabled is a state of mind"
"Just be positive"
"Just stop focusing on your pain so much and it will go away"
"Just do yoga"
"Just stop eating x"
"Just go to sleep on time"
"Just work out more"
"JUST LOOSE WEIGHT"
Imagine saying any of that to a cancer patient. You can't. It feels wrong doesn't it? Why doesn't I feel wrong for chronic, debilitating illness?
Every provider I ever saw, every specialist, every life changing doctor or institution that was meant to have resources and capacity to diagnose me, told me instead that it was in my head and I just had to lose weight and go to therapy - when I was a literal size 8, 5'9, a very generous chest size, and every psychological evaluation said I was emotionally and intellectually mature and mentally stable 🙃
I didn't have autonomic nervous system dysfunction I was just "fat" and "didn't have good conditioning" as a former competitive ballroom dancer.
I didn't have hypermobile Ehlers-Danlos syndrome, just the stress of moving to this advanced country was causing psychological pain in my joints.
I didn't have craniocervical instability, just anxiety and was drug tested instead - no MRI.
I didn't have a genetic disease mostly affecting my ethnic group with a positive genetic marker, just a "normal period for dark girls"... I'm not ever dark 🙃
I spent a decade since moving to America, asking my providers for a shred of dignity when diagnosing me only to hear that it was all psychological and my concerns were of "grandma's from villages in 3rd world countries who don't have access to real medicine".
When my symptoms got unbearable last summer, I started reading medical journals. Weeks and weeks of going between fighting for my people to not be ethnically erased while fighting for me to not be erased as a disabled, immigrant, creative entrepreneur. I randomly found reels and all her content made me cry in disbelief.
There were way too many similarities in what she was experiencing vs me however two decades of abelism, medical trauma, gaslighting and straight up abuse anytime I voiced my symptoms caused me to believe that there is no way I have it THAT bad.
I have it that bad.
I was denied care from the Mayo clinic for having "symptoms too complex to diagnose or treat", finding an EDS specialized clinic was extremely difficult and one that could accept me out of state, during a global pandemic was impossible so I found local providers, marched in with the diagnostic criteria in hand and demanded to be seen as another human being who is desperately sick and in dire need of a provider who is more focused on healing their patients than getting an ego boost.
Thankfully I am finding my team and my P*P is a gem 💎 who was shocked that no doctor has even tried to help me yet.
Today I can exhale.
Today I know my diagnoses are:
Hypermobile Ehlers-Danlos Syndrome (hEDS)
Dysautonomia (POTS)
Craniocervical Instability (CCI)
Familial Mediterranean Fever (FMF)
C-PTSD from a car addicent at 5yr old and
Dissociative Amnesia that followed.
If you made it here, thank you! Every set of eyes, every share, every like, comment, every interaction brings my community that much closer to lowering the number of years it takes for a proper diagnosis and in turn preventative treatment. The current average is 10 years for EDS and 6 for POTS but for me it was 19 for EDS, 12 for POTS and over 10 years of having a confirmation of FMF without any treatment. Pray with me that I can still have babies 🙏
Share, comment, ask questions! I'm an open book and I want you to ask the uncomfortable questions especially if you are able-bodied. Being disabled is not a bad thing, it makes our human experience that much more unique so ask away ❤
