In this episode, we are joined by Wes Michael, the founder and president of Rare Patient Voice, who discusses the importance of including patient voices in healthcare decisions.
Rare Patient Voice connects patients with researchers and companies for interviews and studies, compensating them for their time and insights. Wes shares his background in market research and the experience that led him to create Rare Patient Voice.
The discussion highlights the shift towards patient-centricity, the unique experiences of patients with both rare and non-rare conditions, and the challenges faced by caregivers.
Wes also explains the various ways patients can participate, emphasising the importance of reaching diverse populations and ensuring inclusivity in research. Interested individuals are encouraged to visit the Rare Patient Voice website to learn more and get involved. You can also find them on Facebook and LinkedIn.
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
Friend of the show, Amy Wescott, a children's occupational therapist living with juvenile idiopathic arthritis, returns to the Chronic Pain Club after her first interview with us went on to receive thousands of views.
We discuss Amy's journey to becoming an occupational therapist [12:16], her experience living with arthritis [15:48], the challenges she faced [22:18], and how her personal experience has influenced her career [27:01]. Amy also talks about occupational therapy [34:36], her research [39:31], and the Children's Chronic Arthritis Association (CCAA) [48:15].
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
Angela Laborde, who lives with psoriatic arthritis, among other conditions, returns to the show to share with us why she volunteers and plays an active role in peer support communities online.
In Part 1 (https://open.spotify.com/episode/5KH7EINV5kCI4fK618ngX7?si=3afPdtoRQm-zAkqRkm0hag), we discussed Angela's journey to diagnosis with multiple chronic and autoimmune conditions, the challenges she overcame to get those diagnoses and the daily impact that has had on her.
In this bonus second episode, we discuss her volunteering work, how she helps others, why it's important, and how volunteering can help you cope with your health challenges.
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
Filmed live between World Arthritis Day and World Psoriasis Day, we are joined by special guest Angela Laborde, an American who lives with psoriatic arthritis, among other conditions.
In Part 1, we discuss Angela's diagnosis journey with multiple chronic and autoimmune conditions, the challenges she overcame to get those diagnoses and the daily impact that has on her. We also touch upon the vital role that community and advocacy play in her life now.
Come back for Part 2, where we will also discuss her volunteering work, how she helps others, why it's important, and how volunteering can help you cope with your health challenges.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
Dr Catherine O'Leary, a Clinical Psychologist and person living with psoriasis, joins the Chronic Pain Club Talk Show to provide invaluable insight into the psychology of psoriasis.
With her extensive training in Cognitive Behavioural Therapy, Family Therapy and Interpersonal Psychotherapy, Catherine brings a wealth of expertise to our discussion.
We learn about her personal experiences living with psoriasis, her work as a clinical psychologist, and techniques you can use to manage psoriasis. We also discuss her new book, Coping with Psoriasis, and how she hopes it can help.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
In this episode, we are joined by Angela Gibbons, patient advocate, research partner and founder of The HS Support Network UK and Ireland.
We explore her journey of multiple chronic illnesses and how she went from "not telling a soul" to gradually seeking opportunities for change.
Today, Angela is involved in numerous national and international projects and has set up a charity supporting those with the often overlooked and misunderstood condition of hidradenitis suppurativa.
Like so many, we'll discuss how this pursuit of advocacy and action is part of Angela's coping strategy and how you can get involved.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
In this episode, we learn about the importance of antimicrobial resistance (AMR) and how to combat this growing global health threat.
Vanessa Carter holds the esteemed titles of Antimicrobial Resistance Patient Survivor, Founder and Executive Director of The AMR Narrative, and Chair of the WHO Taskforce of AMR Survivors.
After a car accident required ten years of facial reconstruction, three of which were spent fighting resistant infections, such as MRSA, Osteomyelitis (bone infection) and surgical site infections, Vanessa emerged with a facial disfigurement and the challenge of learning about what it meant to live with Antimicrobial Resistance (AMR).
Hear about Vanessa's journey to advocacy and the challenges facing us with antimicrobial resistance.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
Here is a quick update from me as we share the exciting news that The Joel Nelson Podcast is now part of the Spotify family!
Please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
Follow the HOST: Socials & Links: https://linktr.ee/Joelvsarthritis
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Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
Recorded just before the EULAR Congress 2024 in Vienna, we are joined by Dr Simon Stones, a multiple award-winning patient advocate making his first appearance on the Chronic Pain Talk Show.
In this insightful conversation, Simon shares his personal journey living with juvenile arthritis and his passion for improving patient experiences. We delve into the importance of patient involvement in research, the power of advocacy, and the impact of shared decision-making.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
Psoriatic disease can cause pain and stiffness in the joints, making it challenging to stay active. However, exercise is crucial for managing the condition.
In this episode, we're joined by Craig Young, a sports fan living with psoriatic disease. Along with his diagnosis journey, Craig will share his tips and tricks for staying active and how he has adapted to his diagnosis to continue to enjoy sports despite the challenges of the disease.
Little did we know that this conversation would lead to Craig joining Joel in founding Psoriatic Disease UK, a new patient-led charity in England and Wales that supports equally those affected by psoriatic disease, including psoriasis, psoriatic arthritis, and associated comorbidities. Proving that conversations really do change lives. Find out more here: https://psor.org.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
Follow the HOST: Socials & Links: https://linktr.ee/Joelvsarthritis
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Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
On this episode, we're incredibly excited to have Martin Stevens, a Research Fellow at the Aberdeen Centre for Arthritis and Musculoskeletal Health at the University of Aberdeen, join us.
Hear us discuss his focus on patient and public involvement in research, why this is important, and what he is currently working on to improve patient outcomes.
We talk about the iPRePaRe Study, which explores how patient research partner engagement is implemented in research, and his involvement in the QUICK study, which aims to help quantify chronic pain's impact on engagement in paid work by creating a means to measure it.
These are vitally important topics and ones that regularly feature on the show when we share people's lived experiences with chronic illness, so we are grateful to get a researcher's insight into the ongoing work around these burdens of our disease(s).
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
In the second of this two-part special, we are joined by Heather Christie, aka ArchaeoPlays - an archaeologist, content creator, and gamer.
Heather delves into the past on their Twitch and YouTube channels, where they unearth hidden connections between video games and the ancient world. But their real-life adventure is even more intriguing as they navigate the challenges of living with multiple chronic illnesses, including endometriosis, adenomyosis, PCOS, IBS, interstitial cystitis, and chronic pain.
In part two, we dive into why Heather plays games like Minecraft to distract themself and cope with the realities of living with multiple chronic illnesses and how they put their unique twist on it by linking it to their love of history.
Listen to hear a novel and alternative way to manage your pain.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
In the first of this two-part special, we are joined by Heather Christie, aka ArchaeoPlays - an archaeologist, content creator, and gamer.
Heather delves into the past on their Twitch and YouTube channels, where they unearth hidden connections between video games and the ancient world. But their real-life adventure is even more intriguing as they navigate the challenges of living with multiple chronic illnesses, including endometriosis, adenomyosis, PCOS, IBS, interstitial cystitis, and chronic pain.
In two episodes recorded in front of a live audience on the Chronic Pain Club Talk Show, Heather first shares with us their story of chronic illness before, in part two, we dive into why they play games like Minecraft to distract and cope with the realities of living with these, and how they put their unique twist on it by linking it to their love of history.
Check out this episode for our usual lived experience story, but come back for Part 2 to hear a novel and alternative way to manage your pain.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
Follow our GUEST: YouTube: https://www.youtube.com/@archaeoplays Twitch: https://www.twitch.tv/archaeoplays Instagram: https://www.instagram.com/archaeoplays
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Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
For the 50th episode of the Joel Nelson Podcast, we are joined by the fabulous Ali DiGiacomo!
Diagnosed with Juvenile Idiopathic Arthritis at 15 and then hit with severe Rheumatoid Arthritis at 22, Ali went from competitive swimming to giving up fitness entirely. But a decade later, she decided to fight back, one workout at a time.
Whether you're struggling with chronic pain, looking for a fresh perspective on fitness, or simply in need of a dose of inspiration, Ali's RA story is a must-listen.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
In this episode, we are joined by Chloë Hammond, a trailblazing clinical nurse who is breaking down barriers in the healthcare industry, and her amazing assistance dog, Ocho.
Despite being a wheelchair user and an assistance dog owner after being diagnosed with a rare disease at the age of 15, Chloë thrives in her role as one of the few disabled nurses in the UK.
In this episode, we'll explore Chloë's unique journey as a nurse with a disability, the importance of assistance dogs, how Ocho enhances Chloë's life, and the shockingly low representation of disabled individuals in the healthcare workforce and what needs to change.
This engaging conversation will challenge your perspective, ignite inspiration, and leave you with valuable insights on disability inclusion and achieving dreams despite adversity.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
On Day Three of the EULAR Congress in Vienna, we have a bumper episode for you as the podcast series becomes a talking point of the conference!
In this episode, you will hear from: Raquel Vaz, Scientific Project Leader at IFPA Paul Studenic, Researcher and Rheumatologist at Medical University of Vienna Rebecca Beesley, Volunteer at Juvenile Arthritis Research (JAR Project) Souzi Makri, Past Chair of EULAR PARE and Vice President of the Cyprus League for People with Rheumatism Katy Antonopoulou, PARE Committee Member and President of Sjogren’s Europe
You can find us all week at Booth O22. Join us and share your great work to be part of this special podcast series recorded live and on location in Vienna.
Follow the HOST: Socials & Links: https://linktr.ee/Joelvsarthritis
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DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
We are putting the patient voice into the EULAR conversation on Day 2 of the Congress as we are joined by Andreas Dam, developer of the RheumaBuddy app, and award-winning patient advocate and Chair-elect of the EULAR PARE Committee, Dr. Simon Stones.
You can find us all week at Booth O22. Join us and share your great work to be part of this special podcast series recorded live and on location in Vienna.
Follow the HOST: Socials & Links: https://linktr.ee/Joelvsarthritis
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Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
As we record LIVE from EULAR 2024 on IFPA’s booth to raise awareness of psoriatic disease and the Good Care for PsA project, we speak to some brilliant guests as the Congress heats up.
In this episode, you will hear from Ingvar Ingvarsson, Vice President of IFPA, Zoë Clark, Programme Manager at NASS, and Loreto Carmona, Rheumatologist, Epidemiologist, and EULAR Advocacy Chair. We talk about their hopes, plans, and work at Europe’s largest Rheumatology gathering.
You can find us all week at Booth O22. Join us and share your great work to be part of this special podcast series recorded live and on location in Vienna.
Follow the HOST: Socials & Links: https://linktr.ee/Joelvsarthritis
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Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
Hidradenitis Suppurativa (HS) affects countless individuals, causing painful abscesses and scarring and impacting every aspect of life. Yet, it often remains shrouded in silence and misunderstanding. Join us for a powerful conversation with Barry McGrath, co-founder of HS Ireland, patient advocate, and former scientific clinical researcher, as we shine a light on this chronic condition.
Barry discusses his own experience with HS and the challenges faced by people with the condition. He also provides advice for people who are newly diagnosed with Hidradenitis Suppurativa, including finding a good medical team, joining a patient support group, and advocating for themselves.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our awareness work. <3
Follow our GUEST: Website: http://hsireland.ie Instagram: https://www.instagram.com/hs_ireland Twitter: https://twitter.com/hsireland1 LinkedIn: https://www.linkedin.com/company/hs-ireland YouTube: https://www.youtube.com/@HSIreland
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Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray
For Lupus Awareness Month in May, we are joined by Melissa Chieza, an occupational therapist and mental health practitioner who has been living with Type 1 Diabetes and Lupus since she was a child.
In the episode, Melissa discusses her experiences living with Lupus and Type 1 Diabetes since she was a child. She talks about the challenges of managing both conditions, including the emotional toll and the importance of self-care. Melissa also offers advice to others who are living with chronic illnesses, such as finding a support system, advocating for yourself, and learning to say no.
If you enjoyed this episode, please remember to leave a review and subscribe wherever you listen to help more people find our peer support community. <3
Follow our GUEST: Instagram: https://instagram.com/melcee97 Twitter/X: https://twitter.com/@mel_chieza
Follow the HOST: Socials & Links: https://linktr.ee/Joelvsarthritis
Join our Online Peer Support Community and Discord server here: https://discord.com/invite/dUean4vDcX
Watch The Chronic Pain Club Talk Show and these interviews LIVE on YouTube and join the conversation!
DISCLAIMER: Our content is for informational purposes only and does not substitute medical advice. The host of this podcast and its producers are in no way medically trained and do not claim to be. On this show, we share the lived experiences of others—their stories are their own, and we cannot be held responsible for their views or recommendations. Everyone is unique—what works for one person may not work for another. Always consult your medical professionals.
Music Credit: Buffon – by Gideon Murray