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The Spoonie Struggle

May 19, 2021

Episode 11: Shayla Symone's Story With Ehlers Danlos Syndrome and Racial Discrimination

In this episode, we discuss Shayla Symone’s story with Ehlers Danlos Syndrome. She also has POTS, IBS, and Fibromyalgia. Shayla began to experience symptoms of EDS when she was in elementary school and was formally diagnosed in 2018/2019, a span of almost 15 years. Shayla assumed that all children experienced chronic pain, and didn’t know that it wasn’t normal to experience symptoms like that until she was an adult.  Until her formal diagnosis, she was told that her issues were primarily psychological, rather than physical. One physician had mentioned to Shayla when she was injured at age 13 that she might have EDS. However, a later doctor said that since she was black, she couldn’t possibly have EDS or experience pain, and “black people will be just fine.” She felt so humiliated by those experiences. She felt traumatized and didn’t go to the doctor for 6-8 months after that. It made her not even want to get a diagnosis.

Once she felt comfortable again, she went to another physician, who formally diagnosed her with EDS. She felt so validated by that experience. It took her 3-4 years to finally be prescribed pain medication, because doctors though that “we know how your people are with opioids and pain medication” and would not prescribe anything for her, even though she had already followed all of the other recommendations given to her for pain management. Her challenges have included discrimination (in multiple settings including police, doctors, bosses, and professors), the invisibility of EDS, people telling her she looks fine, getting a ticket for legally using her Handicap placard, and always having to prove that she had an illness. She has advocated for herself by speaking up with professors, educating others about her condition, speaking on podcasts about her experience, and serving as a student advocate on the board of disabilities at her college

She has had multiple joint stabilization surgeries. She has tried lots of other things to help with her symptoms including exercise, changing her diet, CBD, maintenance surgeries, braces, topicals, heated blanket, weighted blanket, pillows, tens unit, and a shower stool. Her health conditions impact dating, friendships, and working.

She has had jobs that were unwilling to provide very reasonable accommodations to her. Shayla copes by talking about her experiences online support groups, using chat rooms, journaling, psychotherapy, mindfulness, meditation, and resting. She recommends that spoonies advocate for themselves by using your voice, telling your story, and educating others.  







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Hosted by: Jessica Temple 

Music by Antarcticbreeze Music

Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment.

Copyright 2021 Jessica Temple