The Voices Behind The Pink Gene Project

Women from our TikTok open call share what happened when they sought answers. They wish they had been heard.

“All of your labs are stable now. I think a referral to a psychiatrist so they can get to the root of your pain.” Fast forward 4 months: diagnosed with blood cancer and RA.

It took me 8 years to get diagnosed with an autoimmune disease. I saw so many doctors. Change your diet, exercise more, here’s an anxiety med (almost killed me from serotonin syndrome), try mindfulness and yoga. A thyroid panel would have diagnosed me at the start.

I was told there was no point in putting EDS on my medical chart because "there's no cure" and I was already "doing all the things" that could help like establishing myself as a chronic pain patient and attending PT... It took me over 10 years to get my official diagnosis, 20 years to get them to believe I was suffering in the first place despite all my labs being "normal". I even had a pain dr tell me she didn't believe EDS was enough of a reason for me to be in as much pain as I was in. Endless stories. I've been dismissed and told I was faking it so many times I've lost count. I was told it was probably just anxiety. I was told I was a "hypochondriac pulling random conditions off WebMD" when I starting pushing and advocating for my EDS diagnosis. I was called "overly sensitive" because I could always tell when I had an infection before the tests registered as positive (chronic UTIs every month after menstruation since age 14, I think I know what it feels like)... so I'd go back after 2 or 3 days with the same complaints and the tests would register VERY positive and they'd tell me I should've come in sooner to treat it and I was actively putting myself at risk by "waiting until it gets bad". I was also told all my migraines were probably just bad headaches and a result of anxiety and stress and I just needed to learn to meditate.... 25+ years later, they finally granted me a brain MRI... which showed so much white matter that it was obvious I'd been suffering chronic migraine. I now get 2 injections and take 2 oral meds just to treat my migraines.

Oh goodness. Back in ‘80s, nobody knew much about autoimmune. It was 7 years in, most on prednisone. IYKYK. I was a case study for Johns Hopkins university and even they said they didn’t know what was wrong. My primary had a new nurse practitioner in his office. She said, bring me every record from the onset of symptoms. It was a LARGE file. She took them home, laid them all on the floor and called me on Monday. She said, you have lupus. They did the bloodwork nobody else had ever done and it confirmed the diagnosis.

It’s actually in my medical chart, I was hospitalized for severe pain, they said a “Chiari malformation does not cause pain” after my MRI showed a Chiari malformation and denied me a consult to a Chiari specialist. They put in my chart that it was an emotional aspect to my pain and a social aspect to my pain, and I needed to go see psychology. In my chart. It took me months of Dr having find a doctor that didn’t see that chart and finally get correctly diagnosed with one of the most painful conditions known along with the Chiari malformation I have Trigeminal neuralgia.

“You're busy, you're just tired, its peri, it's depression, it'll normal. exercise more, eat better.” -> adenomyosis, fibroids and a cyst lead to severe anemia.

Would you like to be part of the next installment of From the Desk of The Pink Gene Project?

I’d love to hear your story and give space to the experiences that so often go unheard. If you’d like to share your voice, visit my Contact page and reach out. I’d be honored to hear from you.