Why “The Professional Patient?”
Good question. I sometimes think I spend as much time in hospitals or with doctors as I do at home. I was born with several serious conditions; I’m disabled, partially deaf, and the rest with profound hearing loss. Ambulance, ER, and certain floors, like cardiac or neurological units, know me by name. I’m a professional patient. I know how things work, how to make things work, and I’ve been through sudden life-changing diagnoses that shatter your world so hard that you don’t know where the pieces are to put it back together. Navigating and maneuvering through a complex system, advocating for yourself, and getting what you need when someone or something may be in the way. Some people with disabilities may not be aware of resources or options that can help them manage their disabilities and improve their quality of life.
There are a lot of blogs, sites, and resources by and/or for healthcare professionals. What about the people they care for? What about the things many don’t consider? Working with or through the system to get what you need. To make sure, regardless of certain policies, you will never feel dismissed, mistreated, or less than human. It’s overwhelming at first, and resources and educational materials don’t cut it. People who should know what no one else mentions.
There’s comradery. That is the mission of this website and newsletter. To be there, support, and help others navigate a complex system that isn’t always in their favor, but they can make it in their favor. A subscription to our Substack newsletter is free, as is this site. No paywalls or bonus content is reserved for specific people or people who pay. This is for anyone. Everyone. Knowledge is power, and so is knowing you’re not alone. Every week, this newsletter will feature a blog post by me, someone sharing their story (spotlight), and an article or something else worth a read. There will be a chat/community feature in our Substack newsletter that will be open to all.
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