Charis Hill's guest appearances

Charis Hill

Beyond The Dollar - Deep and Honest Conversations On How Money Affects Your Well-Being

Medical Error Interviews

AXSChat Podcast

AiArthritis Voices 360 Talk Show

Jason Vitug

Cait Flanders

Caroline Casey

Nicole Antoinette

Tori Dunlap

Chad Carson

Grace Chon

Jason Zook

Jared Easley

Jim Smith

Paul Smith

Matt Iseman

Howard Bloom

Hillary Johnson

Pete McPherson

OwlTail

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 https://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   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest 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  Need a Counsellor? 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.

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: <a href="http://BeingCharis.com" rel="nofollow" target="_blank">BeingCharis.com</a> <a href="https://beingcharis.com/" rel="nofollow" target="_blank">https://beingcharis.com</a> Facebook: Charis Hill - Writer, Speaker, Advocate - Being Charis <a href="https://www.facebook.com/BeingCharis" rel="nofollow" target="_blank">https://www.facebook.com/BeingCharis</a> Global Healthy Living Campaign:  <a href="https://www.ghlf.org/coronavirus-patient-support/" rel="nofollow" target="_blank">https://www.ghlf.org/coronavirus-patient-support/</a> <a href="http://Spondylitis.org" rel="nofollow" target="_blank">Spondylitis.org</a>: <a href="https://spondylitis.org/resources-support/support-resources/" rel="nofollow" target="_blank">https://spondylitis.org/resources-support/support-resources/</a> Becoming Incurable documentary: <a href="https://www.becomingincurable.com/" rel="nofollow" target="_blank">https://www.becomingincurable.com</a> Be a podcast patron Support <a href="https://www.patreon.com/rss/MedicalErrorInterviews?auth=2eY8hVY9bd5o78a8cmpNSURYZ2VrqXrq" rel="nofollow" target="_blank">Medical Error Interviews on Patreon</a> by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest 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  Need a Counsellor? Like me, many of my clients at <a href="https://remediescounseling.com/" rel="nofollow" target="_blank">Remedies Counseling</a> 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:  <a href="mailto:RemediesOnlineCounseling@gmail.com">RemediesOnlineCounseling@gmail.com</a> 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 <a href="https://dignitasinternational.org/2006/08/30/antiretroviral-drugs-keep-hiv-positive-triathlete-on-track-for-world-event-canadian-press/" rel="nofollow" target="_blank">first person living with HIV</a> 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 (<a href="https://me-pedia.org/wiki/Myalgic_encephalomyelitis" rel="nofollow" target="_blank">myalgic encephalomyelitis</a>) 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 <a href="https://hivprevlab.ca/" rel="nofollow" target="_blank">HIV Prevention Lab</a> at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0152762https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0152762" rel="nofollow" target="_blank">here</a> and <a href="https://www.researchgate.net/publication/289366372_Gay_Poz_Sex_A_Sexual_Health_Promotion_Intervention_for_HIV-Positive_Gay_and_Bisexual_Men" rel="nofollow" target="_blank">here</a>.  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 <a href="https://www.millionsmissingcanada.ca/" rel="nofollow" target="_blank">Millions Missing Canada</a>, and on the Executive Committee of the <a href="https://www.canada.ca/en/institutes-health-research/news/2019/08/government-of-canada-invests-14m-in-biomedical-research-to-improve-the-quality-of-life-of-people-living-with-myalgic-encephalomyelitis.html" rel="nofollow" target="_blank">Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network</a>. I am also a patient advisor for <a href="https://www.hqontario.ca/Patient-Partnering/Health-Quality-Ontarios-Patient-Family-and-Public-Advisors-Council" rel="nofollow" target="_blank">Health Quality Ontario’s Patient and Family Advisory Council</a>, and member of <a href="https://www.patientsafetyinstitute.ca/en/About/Programs/PPSC/Pages/default.aspx" rel="nofollow" target="_blank">Patients for Patient Safety Canada</a>. <a href="https://medicalerrorinterviews.podbean.com/" rel="nofollow" target="_blank">Medical Error Interviews</a> 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.

Charis Hill: Accused of fusing own back bones - Post Traumatic Growth - from Athlete to Advocate

Charis Hill is a professionally disabled writer, speaker and model living with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis talks about how they have to rely on food stamps and Medicare while living on $12,000 a year, why they had to do things like keep cash on hand when going through the homebuying process, and why Charis feels lucky despite the many systemic barriers stacked against them.Stick around to the end of the episode where I’ll distill some takeaways including some insights into the housing situation for lower income residents in the U.S. For resources mentioned in the episode, head to http://beyondthedollar.co/66*theme music by Donovan Dorrance

Charis Hill is a professionally disabled writer, speaker and model living with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis talks about how they have to rely on food stamps and Medicare while living on $12,000 a year, why they had to do things like keep cash on hand when going through the homebuying process, and why Charis feels lucky despite the many systemic barriers stacked against them.Stick around to the end of the episode where I’ll distill some takeaways including some insights into the housing situation for lower income residents in the U.S. For resources mentioned in the episode, head to <a href="http://beyondthedollar.co/66" rel="nofollow" target="_blank">http://beyondthedollar.co/66</a> *theme music by <a href="https://www.donovandorrance.com/" rel="nofollow" target="_blank">Donovan Dorrance</a>

Buying a Home in Poverty With Charis Hill

Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she and co-host Charis Hill discuss the evolution of the term Ankylosing Spondylitis into the new umbrella term:  Axial Spondyloarthritis. What does this new term mean? How will it impact treatment options or the patient experience? Does it even matter what your diagnosis is if the treatments for AiArthritis are all basically the same? Listen in as they talk about these and other issues surrounding finding the right diagnosis. Then visit us on social media or online to make your voice heard in the ongoing discussion.    Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!   If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).   Be sure to check out our top-rated show on  Feedspot!   Show Notes: Episode 10 – “The Right Diagnosis”   00:57 – Tiffany welcomes listeners and fellow patient co-host, Charis Hill 03:14 - The diagnosis of ankylosing spondylitis has been replaced with the umbrella term “axial spondyloarthritis” 03:46 - Non-radiographic axial spondyloarthritis was also added as a diagnosis that would cover early or atypical disease presentation that isn’t visible on radiographic imaging 06:10 - Some physicians within the rheumatology community do not believe there is a meaningful reason to differentiate between radiographic and non-radiographic diagnoses  06:25 - There is still a lack of clarity with regard to diagnostic coding which can impact patient access to treatments and the ability of researchers to track diseases 08:08 - Charis’ diagnosis story 15:08 - Early research suggests that non-radiographic axial spondylitis may be equally common in men and women, is often found in people who are HLA-B27 negative, and may have lower inflammation markers on blood work than the radiographic variety 16:35 - Biologically female patients are more likely to have neck involvement than biologically male patients, who present with the traditional lower spine involvement 18:16 - Axial spondyloarthritis is a more clinically accurate term because ankylosing spondylitis references only fusion of the spine, whereas axial spondyloarthritis encompasses inflammation or arthritis involvement anywhere in the center of the body 21:30 - Within the medical community, there is still significant conversation about what terminology to use 22:40 - Tiffany wonders whether radiographic patients would object to sharing a diagnosis with non-radiographic patients 23:47 - The Spondylitis Association of America has detailed information on their website about the differences in the changing terminology 24:37 - Spondyloarthrtis is the umbrella term that encompasses radiographic, non-radiographic, and peripheral disease presentations 24:57 - Patients want to be informed about their diagnosis terminology and understand what it means 26:05 - There has been considerable effort to raise awareness about Ankylosing Spondylitis, and now some people fear that changing the term will make it even more difficult to educate the public about this disease family 27:43 - Possibly grouping several diagnoses together will help raise awareness by increasing the numbers of people united toward the same goal 29:05 - Patients are still reporting that doctors don’t believe them without radiographic evidence 29:15 - Hopefully using the umbrella terminology with the subset diagnoses will help all rheumatologists to understand that not all patients will present with radiographic evidence 30:28 - The CDC does not have an accurate count of the number of patients with axial spondyloarthritis because many people with non-radiographic AxSpa were given a different diagnosis code so they could have access to treatments 32:05 - Even if the treatment isn’t going to change, patients want validation that their doctor knows exactly what is going on with them 32:15 - Patients want an accurate diagnosis so that they will have access to the right treatments in the future as new medications may be approved for their specific diagnosis 33:08 - Rheumatoid arthritis research has been applied to AxSpa patients, even though those diseases are very different 34:46 - Accurate diagnosis in medical records may also be important to future generations for reporting their medical history accurately 39:45 - Rheumatologists treat 200+ different diseases, so it is important for the patient to be knowledgable about their own disease because you may be 1 of only 10 patients your doctor sees with your specific disease 41:30 - Tiffany thanks Charis for co-hosting the episode 41:55 - Tiffany invites everyone to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic 42:53 - Visit aiarthritis.org/podcast to nominate yourself or someone else to co-host an episode of AiArthritis Voices 360

Welcome to AiArthritis Voices 360. This week, join your host, Tiffany, as she and co-host Charis Hill discuss the evolution of the term Ankylosing Spondylitis into the new umbrella term:  Axial Spondyloarthritis. What does this new term mean? How will it impact treatment options or the patient experience? Does it even matter what your diagnosis is if the treatments for AiArthritis are all basically the same? Listen in as they talk about these and other issues surrounding finding the right diagnosis. Then visit us on social media or online to make your voice heard in the ongoing discussion. Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted! If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. <a href="https://aiarthritisvoices.org/" rel="nofollow" target="_blank">JOIN TODAY!</a> AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at<a href="http://www.aiarthritis.org/podcast" rel="nofollow" target="_blank"> www.aiarthritis.org/talkshow</a>. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on  <a href="https://blog.feedspot.com/arthritis_podcasts/" rel="nofollow" target="_blank">Feedspot</a>! Show Notes: Episode 10 – “The Right Diagnosis” 00:57 – Tiffany welcomes listeners and fellow patient co-host, Charis Hill 03:14 - The diagnosis of ankylosing spondylitis has been replaced with the umbrella term “axial spondyloarthritis” 03:46 - Non-radiographic axial spondyloarthritis was also added as a diagnosis that would cover early or atypical disease presentation that isn’t visible on radiographic imaging 06:10 - Some physicians within the rheumatology community do not believe there is a meaningful reason to differentiate between radiographic and non-radiographic diagnoses  06:25 - There is still a lack of clarity with regard to diagnostic coding which can impact patient access to treatments and the ability of researchers to track diseases 08:08 - Charis’ diagnosis story 15:08 - Early research suggests that non-radiographic axial spondylitis may be equally common in men and women, is often found in people who are HLA-B27 negative, and may have lower inflammation markers on blood work than the radiographic variety 16:35 - Biologically female patients are more likely to have neck involvement than biologically male patients, who present with the traditional lower spine involvement 18:16 - Axial spondyloarthritis is a more clinically accurate term because ankylosing spondylitis references only fusion of the spine, whereas axial spondyloarthritis encompasses inflammation or arthritis involvement anywhere in the center of the body 21:30 - Within the medical community, there is still significant conversation about what terminology to use 22:40 - Tiffany wonders whether radiographic patients would object to sharing a diagnosis with non-radiographic patients 23:47 - The Spondylitis Association of America has detailed information on their website about the differences in the changing terminology 24:37 - Spondyloarthrtis is the umbrella term that encompasses radiographic, non-radiographic, and peripheral disease presentations 24:57 - Patients want to be informed about their diagnosis terminology and understand what it means 26:05 - There has been considerable effort to raise awareness about Ankylosing Spondylitis, and now some people fear that changing the term will make it even more difficult to educate the public about this disease family 27:43 - Possibly grouping several diagnoses together will help raise awareness by increasing the numbers of people united toward the same goal 29:05 - Patients are still reporting that doctors don’t believe them without radiographic evidence 29:15 - Hopefully using the umbrella terminology with the subset diagnoses will help all rheumatologists to understand that not all patients will present with radiographic evidence 30:28 - The CDC does not have an accurate count of the number of patients with axial spondyloarthritis because many people with non-radiographic AxSpa were given a different diagnosis code so they could have access to treatments 32:05 - Even if the treatment isn’t going to change, patients want validation that their doctor knows exactly what is going on with them 32:15 - Patients want an accurate diagnosis so that they will have access to the right treatments in the future as new medications may be approved for their specific diagnosis 33:08 - Rheumatoid arthritis research has been applied to AxSpa patients, even though those diseases are very different 34:46 - Accurate diagnosis in medical records may also be important to future generations for reporting their medical history accurately 39:45 - Rheumatologists treat 200+ different diseases, so it is important for the patient to be knowledgable about their own disease because you may be 1 of only 10 patients your doctor sees with your specific disease 41:30 - Tiffany thanks Charis for co-hosting the episode 41:55 - Tiffany invites everyone to visit<a href="http://www.aiarthritis.org/podcast" rel="nofollow" target="_blank"> www.aiarthritis.org/podcast</a> to access resources and provide your thoughts on this topic 42:53 - Visit<a href="http://aiarthritis.org/podcast" rel="nofollow" target="_blank"> aiarthritis.org/podcast</a> to nominate yourself or someone else to co-host an episode of AiArthritis Voices 360

Episode 10 Patients Weigh In: Why the ‘Right‘ Diagnosis Name Matters w/ Charis Hill