018: Dominique Viel, Founder of InvisiYouth Charity, on Teens in the Medical System and Navigating Invisible Illness Between Childhood and Adulthood
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Dominique Viel is the founder of InvisiYouth Charity, a 501(c)3 nonprofit organization that helps teens and young adults around the world with varied chronic conditions and disabilities discover empowering lifestyle programs to live full lives while battling illness. A natural progression of speaking engagements she began as a teen in research hospital treatment centers, she launched InvisiYouth in 2015 after years of self-advocacy, having experienced a lack of patient-centered platforms that served to bridge the gap between the medical and non-medical aspects of her life while living with invisible illness. In particular, her focus is on teens – the “older” pediatric patients often overlooked and misunderstood by the medical establishment. She strives to foster greater communication and compassion between these patients and their medical teams, and to encourage teens to find outlets to live creative, fulfilling lives in spite of – but with reverence to – their disabilities.
**Join us as Dominique shares… **
that she lives with both visible and invisible illness in the forms of: RSD (Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome/CRPS), scoliosis, tachycardia, and undiagnosed EDS (Ehlers Danlos Syndrome) with hypermobility
that she first got sick a decade ago (right before she turned 16), and RSD ended her competitive tennis career
that, like so many patients with chronic illness, she experienced the “revolving door” of specialists, tests, and procedures in the early stages of her diagnosis
that she struggled to maintain and keep balance in her life as a high school student with her mounting medical conditions
that she taught herself to be ambidextrous as a result of RSD/CRPS
that she was apprehensive to try acupuncture and cupping, but had great success with these therapies for managing symptoms of RSD/CRPS
that she struggled with chronic illness visibility in college, and transferred schools in her freshman year because of a lack of accommodation
that she learned very early on to be her own health advocate, and had an additional early advocate in her mother, who is a nurse
that she adapted quickly to new career options because of her physical limitations; her narrative came second to her body’s needs
the grieving process of health changes, which accelerated her maturation process because of discussions about mortality
that she had no community in the invisible illness world until she launched InvisiYouth at the age of 22; many of her friends either backed off or struggled to understand her conditions because they couldn’t see them
the importance of being proactive about your health, rather than reactive
that she’s been unofficially diagnosed with EDS – and not officially diagnosed because of the cost and limitations of testing
that when she was younger, her lack of ability to explain her conditions made her feel like less of an authority on her own body
the lack of disability representation in the media, and how important it is to expand our understanding of representation
that the name of InvisiYouth was rooted in her feeling of invisibility being in an older, often misunderstood youth demographic
that for the last 7 years she’s speaking publicly at the Children’s Hospital of Philadelphia, addressing doctor-patient communication and responsibilities with particular reference to the teen and young adult community
that she structured InvisiYouth to work functionally around her disabilities
how she prepares daily and weekly to manage work and life around her symptoms
her advice for those with disabilities seeking remote work
the importance of meaningfully asking our friends “how are you?” and seeking a truthful response
that chronic illness, success, and happiness are NOT mutually exclusive
the importance of celebrity disability awareness, and how these individuals can put a face on invisible illness for the masses
that she’s now been to 47 doctors, and very few ever asked about how she was feeling – which has impacted her goal to empower both patients AND doctors to better communicate together
the importance of owning one’s medical adaptations This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)
