Voices Across America

My Patient Story

Abbey

State: Minnesota
Congressional District: MN03

Diseases

Chronic Pain, Genetic Disease, Neurological Disease, Rare Disease

Issues and Challenges

Abbey has encountered: Access to Expert Providers, Access to Medicine, Insurance Issues, Disability, Invisible Illness, Job Insecurity / Loss, Transparency in Health Care

My Story

I consider myself lucky to have been diagnosed with Classic Ehlers-Danlos Syndrome at a young age, and yet this early diagnosis has done little to improve my access to quality medical care. Chronic pain has been my constant companion ever since my first patella dislocation at age 6. I struggled with access to pediatric pain management, and specialists couldn’t seem to understand the importance of treating the pain of a seemingly happy child.

It took until I developed juvenile disc degeneration and a compression fracture in my spine (likely related to my genetic disorder) for a pain management plan to be considered. Gravity quickly became my biggest enemy, as the pressure of it alone can make my vertebrae feel like the bones are grinding together. I get nerve pain in my leg from the slipped vertebra, and my muscles spasm from being overworked. Surgery is too risky with my conditions until it becomes an emergency situation. I've been told it's unlikely I'll ever sit without pain again. This is my life with chronic pain.

The seriousness of my pain can be doubted sometimes because I’m someone who smiles easily. I had an occupational therapist once tell me "[my] smile is so genuine, despite the pain [I] so obviously feel", all while I shifted relentlessly in her office seat trying to relieve my spine of even a fraction of pain, barely able to focus on her words. Her message stuck with me as an advocate - I don't believe smiling while also feeling pain makes the smile any less authentic or the pain less severe. A smile through pain is a conscious choice to choose joy, however fleeting, in that moment. It's a common chronic pain phrase to say that you paste on a "fake smile" to get through the pain while out in public, but I don't find anything "fake" about enjoying life despite the rain.

I want people to understand that people with chronic pain look like me. Pain is confusing and often awkward to talk about because it makes people uncomfortable and sad. However, this is the reality of my life. Chronic pain is this thing that lurks in the shadows some moments while in other moments it jumps in front of me and demands attention. Pain has been with me since I was a young child and will remain with me until I’m old.

I refuse to be silent about this major aspect of my life just to make others comfortable. Chronic pain patients deserve better.

My Motivation and Inspiration

I find motivation from the amazing advocates who have paved the way before me. The phrase 'Relentless Forward Progress' is my personal motto, and I derive a lot of motivation from remembering to keep moving forward no matter the pace.

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