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Jessica Gregory’s Power of Poetry: From Medical Gaslighting to Advocacy

Diagnosed with Ehlers Danlos Syndrome, a connective tissue disorder, Jessica Gregory has faced numerous medical challenges, including the pervasive issue of medical gaslighting. Despite the lack of early diagnosis and the dismissive attitudes she encountered, Jessica turned to poetry as an outlet for her frustrations and as a tool for advocacy. Her book, Burns Unit: Poetry to Heal the Wounds of Medical Gaslighting, delves into these experiences, offering a voice to those who have been similarly silenced. Discover how Jessica’s journey from Australia to Belgium has shaped her advocacy work and how her poetry is influencing both the medical community and the broader public.

The Journey of Self-Discovery

Jessica’s journey with undiagnosed Ehlers Danlos Syndrome (EDS) began at birth, though she didn’t start self-identifying as disabled until much later in life. EDS, often misunderstood and misdiagnosed, particularly the Hypermobile Ehlers Danlos Syndrome (hEDS), presents a myriad of symptoms that affect almost every system in the body. These symptoms, such as joint instability, chronic pain, and fatigue, often make it challenging for doctors to connect the dots, leading to years of misdiagnosis or, worse, dismissal.

Jessica’s early years were marked by unexplained pain and joint dislocations. Despite these challenges, she pursued her passion for music, enrolling in a conservatory to study the trombone. However, the physical demands of her studies, coupled with the dismissive attitudes of medical professionals, led to a decline in her health. This period of her life, filled with both physical and emotional pain, became the catalyst for her writing.

Turning Pain into Poetry

In 2020, bedridden and struggling with worsening symptoms, Jessica found solace in poetry. Her collection, Burns Unit, was born out of this pain. The book explores the themes of medical gaslighting and the struggles of living with an invisible disability. Jessica’s poetry doesn’t just tell her story; it speaks to the broader experience of those who have been marginalized and dismissed by the medical community.

Her work also serves as a beacon of hope, showing that even in the darkest times, creativity can flourish. Inspired by figures like Frida Kahlo, who turned her physical suffering into art, Jessica’s poetry is a powerful tool for both self-expression and advocacy. It challenges societal norms, pushes back against the medical establishment, and provides a voice to those who have been silenced.

Advocacy and the Medical Community

Beyond her writing, Jessica Gregory is a fierce advocate for patients, particularly those with rare or undiagnosed conditions. She uses her platform to educate both the public and medical professionals about the realities of living with a disability. Her advocacy work is not just about raising awareness; it’s about changing the way society views and treats disabled individuals.

Jessica’s insights into the medical field, particularly her experiences with medical misogyny, highlight the systemic issues that many patients face. She advocates for a more compassionate and informed approach to medicine, one that recognizes the complexities of conditions like Ehlers Danlos Syndrome and treats patients with the dignity and respect they deserve.

Jessica’s story is a reminder that our voices matter. Whether through poetry, advocacy, or simply sharing our experiences, we can make a difference. Jessica Gregory is living proof that even in the face of adversity, we can find our voice and use it to create change.

WATCH NOW: 

Dive deeper into Jessica Gregory’s journey and advocacy work. Click here to watch.

Episode 65 Show Notes

Welcome Jess Gregory

In this episode of Pushing Forward with Alycia | A Disability Podcast, Alycia Anderson chats with Jess Gregory, a disabled poet, writer, and patient advocate who uses her experiences with Ehlers Danlos Syndrome (hEDS) and medical gaslighting to fuel her poetry and advocacy work. Jess, author of Burns Unit: Poetry to Heal the Wounds of Medical Gaslighting, shares her journey from undiagnosed illness to becoming a powerful voice in the disability community. She discusses the challenges of living with a rare condition, the importance of believing patients, and how she channels her experiences into her writing to inspire and educate others.

Jess opens up about her diagnosis of Ehlers Danlos Syndrome, a complex connective tissue disorder that is often misdiagnosed or undiagnosed. She recounts her struggles with the medical system, where her symptoms were frequently dismissed or misunderstood, leading to years of pain and uncertainty. Through her poetry, Jess found a way to process her experiences and advocate for better understanding and treatment of chronic illnesses.

This episode also explores Jess’s advice for others facing similar challenges and her hopes for how her work can influence both the medical community and the general public. Her poetry serves not only as an outlet for her own experiences but also as a beacon of hope for others who feel silenced by their conditions.

Key Moments:

–Jess’s Journey with Ehlers Danlos Syndrome

–The Inspiration Behind “Burns Unit”

–Using Poetry to Heal and Advocate

–Challenges in the Medical System

–Advice for Patients and Medical Professionals 

Skip to:

[3:12] – Jess shares her journey with undiagnosed Ehlers Danlos Syndrome and the impact of medical gaslighting.

[10:45] – The inspiration behind Burns Unit and how writing became a form of therapy for Jess.

[15:30] – Jess discusses the importance of disability-informed therapy and finding the right support.

[21:20] – A powerful reading from Burns Unit that resonates with many living with chronic illness.

[28:55] – Jess’s advice for the medical community on how to better support patients with rare diseases.

Quote by Jess Gregory:

Your shame will turn to rage. Your rage will turn to action. Your action will turn to change. Your change will turn to progress.

Connect with Jess Gregory:

Jess Gregory’s Website | Instagram | Burns Unit Book: Purchase on Amazon

Connect with Alycia:
Feedback | Instagram | LinkedIn

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Stay tuned for more inspiring conversations on Pushing Forward with Alycia. Open hearts, clear paths. Let’s go.