Charis Hill: Accused of fusing own back bones - Post Traumatic Growth - from Athlete to Advocate
If you’re living with a complex chronic illness, you’ve probably had many medical appointments -- and probably experienced many medical errors, from the benign errors that did not impact your life, to potentially serious errors that will forever lower your quality of life.
When Charis Hill’s pain skyrocketed and health tanked and no doctor’s were providing a correct diagnosis, Charis reached out to their estranged father, expecting to get advice on living with a disability. What Charis didn’t expect was for their father to diagnose Charis with ankylosing spondylitis, or AS, an inflammatory disease that causes bones in the spine to fuse. This fusing makes the spine less flexible, can cause a lot of pain and greatly impact mobility.
As Charis’s body failed, Charis’s identity as an athlete slipped away -- and so began a journey into the external financial world of health care and health insurance systems -- and a journey into the internal emotional world of trauma and meaning and growth. A journey that is taking - and making - Charis into an unintended chronic illness advocate, giving voice and political clout to the medically marginalized.
In our interview - where we faced some minor periodic technical challenges, so please roll with the intermittent audio glitches - Charis tells how they reinvented themselves and learned to love the mobility devices like wheelchairs -- symbols that represent disability to the able in society. Charis shares how these ‘disability symbols’ are actually tools to participate in society, tools of freedom.
Connect with Charis Hill:
BeingCharis.com
Facebook: Charis Hill - Writer, Speaker, Advocate - Being Charis
https://www.facebook.com/BeingCharis
Global Healthy Living Campaign: https://www.ghlf.org/coronavirus-patient-support/
Spondylitis.org: https://spondylitis.org/resources-support/support-resources/
Becoming Incurable documentary:
https://www.becomingincurable.com
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I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
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Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.