Claudia Alick is an activist and influencer with a transmedia social justice practice, creating spaces for entertainment, education and empowerment by and for marginalized communities. While working as a disability advocate in 2009, Claudia found themself suddenly experiencing what they describe as mysterious level 10 pain, accompanied by mobility issues and random muscle spasming. When an immediate diagnosis proved illusive they entered into the diagnostic program at the Mayo clinic, often regarded as the gold standard for patients with mysterious illness. Claudia’s experience at Mayo was mixed, providing some validation but with a frustrating result. They were diagnosed with a myofascial pain disorder of unknown etiology with muscle spasms, which felt like doctors repeating back the symptoms Claudia described without determining any root cause. Fast forward to 2022 and Claudia has just been diagnosed with sarcoidosis, although the implications of this diagnosis are yet to be determined.
In this episode of the Major Pain podcast Claudia talks us through their medical journey so far, including details on their experience at the Mayo clinic, and coping mechanisms they have tried over the years to manage constant pain. Doctors initially insisted they take copious amounts of opiates, but Claudia was unhappy with the loss of mental clarity and abandoned these drugs. Claudia tried lyrica (pregabalin) and was thrilled when their level 10 pain came down to a 3, but soon began experiencing a rare side effect of this drug called aphasia. Claudia would think they were saying one word but outwardly speak another, severely impacting their ability to communicate. Ceasing lyrica resolved this issue, but turned Claudia’s constant pain back up to a 10. Now that they have been diagnosed with sarcoidosis, Claudia is undergoing additional testing to understand what that means. This is an inflammatory disease characterized by the formation of granulomas inside the body, but is also a diagnosis of exclusion. That means Claudia’s doctors are still digging for the root cause of their issues. Throughout this complicated maelstrom, Claudia has remained a remarkably prolific advocate and creator. They share their valuable mindset of finding bits of joy in each day, and discovering adaptations that allow them to continue their work in spite of a medical mystery.
Find Claudia’s social justice work at https://callingupjustice.com/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast/