There are no words to truly capture how it has felt to get the reaction I have by posting that first post for the world to see and judge. The amount of people and level of genuine support has blown me away, and just goes to show how much good there is in the world. I even heard from others who were on their own journey to diagnoses for their diseases – some with AS and some with other conditions.
What I write about is purely from my experience, and for every single person their journey and feelings are different. Like I’ve said before, and will continue to say, all I can hope is that the lessons I have learned will somehow benefit someone else in the future.
A Slippery Slope
I’m not sure where to start. Those who know me best would not necessarily describe me as “fuzzy” or someone who shares personal details unless we are particularly close. Putting my thoughts and experiences out for others to judge feels close to rolling in salt with open wounds. For those who don’t know, a few years ago I was (loosely) diagnosed with an autoimmune disease that causes extreme arthritis and chronic pain in my hips and spine. Luckily, it was caught early so I do not fit the text book clinical definition of the disease, called ankylosing spondylitis (AS). Recently, however, it appears I have a few other neurological symptoms that could add on to that diagnosis, and I am currently in the process of figuring that out.
I have realized that I will no longer tolerate “being sick” define how my life will play out. But that realization, and what it means in terms of actions I need to take, has taken almost 3 years to get to.