ONCE UPON A GENE - Episode 129 - Self Care for Your Healthcare with Ehlers Danlos Patient and Miss Wheelchair Washington - Sarah Tompkins
Miss Wheelchair Washington, Sarah Tompkins has Ehlers Danlos Syndrome (EDS), she does extensive rare disease advocacy work, and centers her messaging around her slogan- practice self care for your healthcare.
EPISODE HIGHLIGHTS
Tell us about your EDS journey and advocacy work.
I'm an Ehlers Danlos Syndrome and chronic pain patient and rare disease, disability rights and invisible disabilities advocate. I've been fortunate to be able to advocate through the Rare Disease Legislative Advocates, Rare Disease Week and Rare Across America programs to grow my patient advocacy and gain confidence, validation and healing from hearing others' experiences. I've learned that being a patient advocate is part of my self care because while I'm advocating for others, I'm also advocating for myself, sharing my story and feeling heard. I encourage everyone to be their own best advocate in any way that's meaningful to them.
Was there a time you didn't have the confidence to advocate for yourself?
A few days after receiving a genetic diagnosis, I went to a support group and met a friend who taught me how to be my own best advocate and she really lit the torch for me. My friend later passed suddenly and unexpectedly as a result in large part to a lack of awareness and advocacy for EDS. That really lit a fire in me to continue advocating with the passion that was passed down to me. After a doctor disregarded my symptoms and concerns based on my appearance, it made me want to advocate more about EDS.
Tell us about Miss Wheelchair.
The Miss Wheelchair USA promotes glamour, self-confidence and community services celebrating accomplishments of women with disabilities. The Dane Foundation organizes the Miss Wheelchair pageant. Their mission is to provide for the unique needs of individuals with physical and developmental disabilities.
How do you pursue advocacy despite what you're going through?
A recent surgery resulted in a more difficult and intense recovery than I expected. In needing more care giving than usual and feeling out of control of my own health, I realized the toll it took on my mental health. Through my Miss Wheelchair Washington message of practicing self care for your healthcare, I meant that to mean that as patients we may not realize we can be our own best caregivers and advocates. The same is true for caregivers who give so much of themselves to others and how hard it is to put their own self care first. Self care is important for everyone regardless of health, diagnosis and abilities. Everyone has the power to improve their self care by being their own best care givers and advocates by practicing kindness and compassion we'd offer others in our position, but sometimes struggle to give ourselves.
CONNECT WITH SARAH
Email sarah.tompkins@edsnw.com
LINKS & RESOURCES MENTIONED
2022 CNP Virtual Family Symposium Registration
Miss Wheelchair USA on Instagram
Sponsor Sarah’s Pageant (Sponsor Your Favorite National Finalist > Sarah Tompkins)
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