Complex Regional Pain Disorder: My Pain is like a Petulant Child

Pris is a 4th generation circus performer and entertainer who has worked in costume design and staged weapon play. She grew up as a very physical child, filling her days with dancing, baseball, basketball and more. She was familiar with the feeling of a normal bone break, and the subsequent healing that should occur. At 20 years old during her first adult job, Pris experienced a traumatic accident in which she was pinned in elevator doors causing bilateral fracturing, breaking everything from her mid forearm into her wrists, hands and fingers. Within 3-4 weeks Pris knew that she was not healing normally. It felt as though her brain and her body were not on speaking terms, and her pain level was not receding. Over the next 18 months Pris would consult with almost 30 doctors, many of whom would brush her off as being hysterical. Years later Pris’s recovery is still ongoing, and she has since been diagnosed with a mysterious chronic illness known as complex regional pain disorder.

In this episode of the Major Pain podcast Pris shares her experiences with complex regional pain disorder, a disease that is poorly understood by the medical community. She describes her pain as a petulant child, never knowing when her symptoms will act up. Her situation is complicated by two more chronic health conditions, Hashimoto’s thyroiditis and asthma. She shares how her three conditions can interact and overlap, adding extra layers of challenge in managing her health. Living with chronic illness has prompted Pris to find connection with coping mechanisms like special music playlists, and to reconnect with the belief systems of her Blackfeet and Lakota ancestors. She discusses feeling societal pressure to mask or hide her disability as much as possible, especially in the entertainment industry that oftentimes does not make room for accommodation. For anyone else going through anything similar, Pris strongly recommends the importance of having a patient advocate, someone to sit in the room during doctors visits and speak up on your behalf. Although her health journey has been extremely challenging, Pris has been surprised to notice the many ways in which chronic pain has shaped her outlook on life for the better.

The bonus episode for the month of August is now available on Patreon, featuring a huge update about Andi and Jesse’s lives! Listen here: https://www.patreon.com/posts/70209325?pr=true

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