Jozette Allah-Mensah (She/Her)
Chronic Conditions: Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS)
My P.O.T.S. is covid-related, like so many of us! For 2.5 years I've been battling the mental, emotional, and physical detriments that comes with having a chronic illness of this severity—and all the ups and downs that come with it. Having P.O.T.S. upended my whole life; every aspect—going out with friends, eating, sleeping, breathing, work—has been impacted by it. I'm still learning how I can best navigate having this while trying to live my best life, but it's not easy. I believe in the power of transformative legislative change to help support anyone with a chronic illness or chronic pain!
As a young, Black woman trying to navigate the medical system, I got the shock of my life: I had to fight for my life, to fight for my life. I was being dismissed by doctors, deemed as someone suffering from only anxiety, not supported or listened to, given wrong medication, refused testing by doctors who thought they knew more than me even though I was the one feeling what I was feeling. Growing up healthy, you're taught that doctors are to be listened to, period. But navigating an illness, you quickly learn that if you aren't taking the lead and doing your own research, fighting for tests when you know something is wrong, etc, you will never get anywhere. And it's ridiculous. Advocating saves lives. We need policies that bolster the patient's voice, and better systems in place that open up opportunities for healing.