Featured Image Caption: 1 year ago on March 9, 2021, a Facebook post by me, Jaesic Feathers: Welp, it’s official. The geneticist diagnosed me with hEDS without testing. As it stands, hEDS doesn’t have a genetic marker. My history is consistent enough with his experience with hEDS patients that I now have a diagnosis. Neat. I’m looking forward to when I don’t feel so empty inside about this. 20 years. It took 20 years for me to get here.
Since this day last year, I have been on an incredible journey of self-discovery and community building. Because of this diagnosis, I’ve been able to start healing my relationship with my body, a relationship where I actively love myself through my pain, seek out accommodations and better routine, and allow myself more grace when things go haywire. It’s been really hard, but I’m getting better at this, and I’m so grateful to finally not hate the vessel that allows me to interact with this plane of existence. It’s sad that it’s taken me this long to get a diagnosis, and even more sad to only just now be on my way to a healthier relationship with my body only AFTER I’ve been medically validated (because being gaslit, patronized, condescended to, dismissed, antagonized, etc. for over 2 straight decades really does do a number on your self-efficacy and esteem; an all too common experience for AFAB people in medical treatment).
FINALLY I am medically valid enough to have medical professionals who take me seriously and work with me to manage my pain and body’s ability. Fucking life changing. Also life changing? Finding people who know what this dynamic disabled life is like. I am beyond grateful for the connecting capabilities of the internet and to my fellow zebras who have offered their own stories and support over the past year. Finally I feel seen and valid and not alone in my health journey.
Being human is hard enough, and then we add medical discrimination because of biases and prejudice, both in medical and personal life. PLEASE listen to people when they talk about their bodies! 9/10 times they are NOT hypochondriacs! And even if that 1 person is, what else is going on that is causing their brains to be so hypervigilant about their health?? What support is not yet present in their life?
Listen. BELIEVE. Stop judging. Respect. Support. We all deserve to feel seen, heard, and valid. And we all deserve the support we need!
If you’re a fellow zebra, I would love to connect with you over your personal journey and to stand in solidarity with you. Please leave me a comment or shoot me a message through the contact tab on my website’s menu! Sending you so much love
A learning opportunity: we no longer use “invisible disability” but instead use “dynamic disability”. Please see the images below to understand why! (This term is also applied to autism, and other forms of neurodivergence.) Thank you 🥰
First image: Created by Asiatu Lawoyin, the Intersectional Autist. Reach them at asiatucoach.com or @asiatu.coach on socials. Image says: “Invisible Disability”: Disabilities are only “invisible” out of ignorance. Invisible is centered within the outside perception & decenters the disabled as well as ignores our internal realities. Also, disabled behaviors rarely are truly invisible.
Second image: What is a Dynamic Disability? A disability which tends to fluctuate in severity (pain, energy, etc.) in a difficult to predict manner. Those with a dynamic disability are able to do certain tasks at one time but unable to complete those tasks at another time. Created by @joannanobanana on socials.
Third image: Autism is a “dynamic disability”. What this means is capacity & functioning are not concrete & may fluctuate dependent on factors such as environment, cognition, executive function, processing capacity, interoception/exteroception, neuro-fatigue, anxiety, communication differences, burnout & sensory overwhelm. This means Autistics may be capable of a task one day, but unable to perform the task at another. Made by Neurodiversally Unbroken 2021.