This week, I’m participating in RA Blog Week. Today’s topic: how I became an engaged patient.
Yesterday, I talked about my origin story but stopped short of talking about how I became an engaged patient… complete with amazingly old pictures I took on my first laptop (and one from T).
Back when I started this blog, I hadn’t seen a doctor in 13 years. That changed in early 2010 as I got a referral to a rheumatologist and was able to finally get some damn medical care… No thanks to my mother.
I grew up abused and neglected, meaning that medical care for my Systemic Juvenile Arthritis – something integral to my well-being – was not a thing. When I got back into medical care via school nurses in college, they legit told me that I knew my body better than they would and that they couldn’t really help me with anything.
I felt like I was drowning in pain.
I came home and cried while sitting in a bathtub in my dorm apartment trying to ease my pain and calm down – and then made the appointment to get to a rheumy 5-6 months later.
After getting back into medical care, it was clear that many health care peeps that I saw didn’t know about my illness. It was hard to be my own advocate while being a young woman dealing with pain. People didn’t believe me about my pain or on my illnesses. In order to get the right care, I had to become an expert on my illnesses, on the medical experience, and on communicating with health care practitioners.
I had to learn to start questioning the system.
I began to add medical stuff into my life, on top of school textbooks, essays, and working multiple jobs. I moved and got a new health care team.
It was a lot to take on, but the transformation wasn’t complete until I was forced to quit graduate school. I had to step it up, and I did.
I spent hours sifting through academic medical journals, medical textbooks, and contacting some of the experts on my illnesses. I began to get more patients asking me questions and writing pieces I wish I had had early on in my lonely journey – especially those about insurance terms and the like.
And it’s just continued from there.
It’s been quite an interesting journey to go from a college sophomore trying to learn about my illness in order to explain it to the hubby to turning into a patient expert. I wonder what 20-year-old me here would say about that.
What about you? What has your patient journey been like?