A twenty-something’s refusal to let Arthur dictate her life, and laughing along the way.
I never sat at the kids’ table at holiday dinners. I found myself more at ease at the adult table where parents discussed doctor check-ups and dental visits for their kids. It gave me the impression that other people existed in my own little medical world. But still, I sat there in isolation; my own problems sometimes discussed, were never fully understood or dignified. I yearned to find other little eighty-year-old bodies living in teenage minds.
Eleven years ago, the ‘worldwide web’ seemed little more than an expedited way to gather information for my school projects – that is until my Mom found CreakyJoints for me. The previously creepy idea of chatting with strangers online turned into a world of much needed patient support. I suddenly found myself connected to those in pain, to those that might ‘get’ it, and I if I was lucky enough, didn’t happen to be sixty-years-old and complaining of osteoarthritis in one joint.
I had been battling Arthur (my arthritis… more on how he got that name later) since age seven. I knew it, my angry joints knew it, my family knew it, my doctors did not.
For years we went round and round with various healthcare teams, listing off new symptoms while supporting them with an alarming medical history. It was still not enough to convince them. They wanted to give my symptoms more time to develop, to mature, so that an easy answer was before them. Well eventually they got their wish, and in the meantime I suffered. The only things saving me were my precious online friends and resources.
My parents poured over what medical literature was available online in the early days. They found enough, and after adding it all up came up with a diagnosis on their own; a diagnosis that would be validated years later by doctors: Undifferentiated Spondyloarthropathy. Since then I’ve also developed RA, Chronic Complex Migraines, and it seems I’m one failed gland away from being labeled with Secondary Sjogren’s Syndrome.
I ultimately went 14 years undiagnosed and not properly treated. I have been massively failed by our healthcare system, and have now dedicated my life to changing that very system. Because frankly, I can’t bear to hear another story like mine, and unfortunately they are still being told every day.
Feeling it was selfish to keep my twenty years of amassed patient knowledge to myself, I began writing my blog at TheHurtBlogger.com where Arthur is always the antagonist and lives a life of his own. I aim to make people laugh at the absurdity of being a chronic patient, challenge their healthcare team to be as effective as possible, and work together to find ways to make our exhausted days just a little bit easier.
I am thrilled to be able to share my story and start writing for CreakyJoints. Life sometimes has a funny way of coming full circle.
Britt aka Hurt Blogger