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The Spoonie Struggle


Apr 14, 2021

Episode 2: Jessica Temple's Story with Ehlers Danlos Syndrome

In this episode, host Jessica Temple shares her chronic illness journey. She discusses that her medical journey started at age 2, and finally got a formal accurate diagnosis in November 2020. She has a diagnosis of Ehlers Danlos Syndrome, with a ton of associate conditions, such as POTS, gastroparesis, possible MCAS, possible tethered cord, arthritis, possible chiari malformation, thoracic outlet syndrome, tachycardia, central vestibular dysfunction, possible craniocervical and atlantoaxial instability, occipital neuralgia, and many others. Although she was always sick as a kid, it got worse at age 18, then in 2007, 2010, and 2019. She has tried pretty much every treatment under the sun, but only a few have been helpful or effective. Challenges of having chronic illnesses for Jessica include time, money, waiting periods for doctors, not being listened to, dealing with chronic pain, having to continue to function when feeling bad, doctors making fun of her, misdiagnosis, and lots of mistreatment. She advocates for herself by bringing research with her, heavily researching her conditions, finding new doctors if doctors were mistreating her, using Facebook (wisely), asking trusted doctors for physician recommendations, writing down questions ahead of time, taking lots of notes, asking lots of questions, walking out of appointments if doctors were horrible to her, contacting national societies, bringing medical records with her, and getting second opinions. EDS impacts her life by affecting sleep, her activity level, her ability to go out and be social, food intake, parenting, relationships, taking up mental space, pain, expense, taking up a lot of time, not being able to bend over, having to be mindful of her every move, being scammed by doctors, missed time with kids, embarrassment over conditions, discrimination, being made fun of by doctors,  and trying to find accurate and helpful treatments. She copes by talking to others, reading up about the conditions, listening to podcasts of varying sorts, starting a new podcast, trying to find the silver lining, exercising, self-care, talking to friends, laughter, and focusing on her kids.

She recommends others do the following to advocate for themselves: research, ask others for suggestions about doctors, search for reputable doctors, come prepared to appointments, track symptoms, bring your medical records and research, don’t take no for an answer, take notes, bring someone else to the session with you, ask a lot of questions, leave honest reviews of the doctors, find experts in the field, contact national societies, and document everything. She also discussed things people should and shouldn’t say to someone with a chronic illness, as well as what she would like others to understand about chronic illness.

Links:

The Spoonie Struggle Symptom Tracking Journal Hardback
The Spoonie Struggle Symptom Tracking Journal Paperback
The Ehlers Danlos Society
The Birth Hour
The Patient’s Playbook

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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