I Am Not My Pain with Melissa Adams

Meet warrior, Alex. Alex is transgender identifying as trans-masculine and non-binary. From a young age, Alex endured many chronic illnesses and disabilities. He/They was later diagnosed with Agenesis of the Corpus Callosum, a rare brain disorder where there is a partial or complete absence of an area of the brain that connects the two cerebral hemispheres. Alex also manages Dandy-Walker Syndrome, a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it that coordinates movement, and additionally lives with blindness in the right eye, arthritis, chronic pain, non-verbal learning disorder, depression, anxiety, PTSD, OCD, autism, and more. Alex works hard to support the disabled community as a full-time Disability Resource Specialist, as well as strives to care for his/their own health. Alex not only faces tremendous obstacles living with multiple, rare conditions, but he/they faces another huge hurdle; Alex must navigate a healthcare system that doesn’t truly accommodate or comprehend his/their needs as a transgender person. Listen as Alex shares his/their story, the challenges of being transgender and chronically ill, and how he/they supports his/their health and well-being.   

Meet warrior, Cedric. Cedric was a US Navy Airman until he suffered a severe back injury on duty leaving him in a wheelchair. With time and hard work, Cedric learned to walk again, but the injury resulted in degenerative back disease. Cedric now manages chronic pain from bulging discs in his lower back which has gradually affected his thoracic spine and neck. From childhood to his time in the Navy, Cedric was taught like most men that to show pain is to show weakness. Tune in as Cedric shares his remarkable story and how he battles his daily pain as well as the stigmas associated with being a man in chronic pain.   

Continuing our conversation with warrior, Allyson Finn. Allyson is a chronic illness advocate, substitute teacher, actress, and business consultant who has spent the last decade unraveling different health issues caused by a hypermobile form of Ehlers-Danlos Syndrome. Recently, Allyson has been experiencing symptoms including severe gastro issues possibly due to POTS, a comorbidity of Ehlers-Danlos. A true veteran of managing chronic illness, Allyson has developed valuable self-advocacy skills in order to best support her physical and mental health. Tune in as Allyson shares more self-advocating advice including how she managed her medical treatment while experiencing new symptoms.

Meet warrior, Allyson Finn. Allyson is a chronic illness advocate, substitute teacher, actress, and business consultant who has spent the last decade unraveling different health issues caused by a hypermobile form of Ehlers-Danlos Syndrome. Recently, Allyson has been experiencing symptoms including severe gastro issues possibly due to POTS, a comorbidity of Ehlers-Danlos. A true veteran of managing chronic illness, Allyson has developed valuable self-advocacy skills in order to best support her physical and mental health. Listen as Allyson shares her thoughts on self-advocating when managing new or difficult doctors and searching for the best medical team and solutions for you. She firmly believes you are the expert on your own body!

Continuing our discussion with warrior, Courtney, who along with uncommon conditions of POTS and Ehlers-Danlos Syndrome, struggles with worsening unexplained and life-altering symptoms. After experiencing extremely painful and concerning complaints for over a month and receiving little help from her family physician and other specialists, Courtney reluctantly attended her local emergency department only to be confronted with negligence and judgement. Tune in as Courtney talks about how her traumatic experience came to an end, and how she’s coping in its aftermath.

Let’s catch up with warrior Courtney, from Episodes S1E11 and S1E12, who discussed the dismissiveness, gaslighting and judgements she faces on her odyssey to find respectful medical care. Courtney manages multiple rare conditions, which include POTS and Ehlers-Danlos Syndrome, but she also struggles with worsening unexplained symptoms, which are accumulating over time. Her uncommon, complex and ultimately poorly understood diagnosed conditions alone create their own significant difficulties when accessing emergency room care. In combination with her new, seemingly unconnected, symptoms Courtney faces nurses and doctors who hyper-focus on certain complaints, such as pain, while completely dismissing or shrugging off others. Ultimately sending her home with no answers, and little more than temporary pain control. Listen as Courtney recounts a recent horrific and nightmarish 21 hour-long emergency room visit, where her symptoms were not only dismissed, but where she was repeatedly denied basic compassionate care and how she’s coping after her ordeal.

Meet warrior, Elianna. After fracturing her growth plate in the fifth grade, Elianna was diagnosed with CRPS, fibromyalgia and Oppositional Defiant Disorder and so began her young life living with illness and pain. More diagnoses followed including chronic fatigue syndrome, migraine, chronic hip bursitis and a rare digestive issue called “dumping syndrome.” Tune in as Elianna shares how she managed her illnesses and the medical system at a young age and how she attributes living with chronic illness as a child to being able to cope with the pain she faces today.