I Am Not My Pain with Melissa Adams

Throwing it back to S1E8 with warrior, Leanne Million. Leanne’s identity was one of drama teacher, actress and all around go getter until she experienced a concussion in a car accident. Managing her physical pain and issues with her neurological function from post-concussion syndrome, Leanne had to leave her job and felt huge pieces of her identity slip away, a common occurrence in the lives of the chronically ill. Tune in as we hear Leanne reveal how she began the process of shifting her mindset on her identity and how she was able to recreate purpose and meaning in her life. If you are interested in Leanne’s services as a Certified Life, Relationship and Sexuality Coach, EFT or Reiki Practitioner, visit leannemillion.com or @leannemillion on Instagram.

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. 

We are throwing back to S2E7 with warrior, Courtney, 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, 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.