The Burnout That Comes With Searching for a Diagnosis
After Christmas I had fallen into a huge state of burnout. Not only had the holidays exhausted me down to my bones, but this burnout had also stemmed from surviving yet another year as a chronically ill patient in the medical system.
Going from appointment to appointment, researching symptoms and related illnesses, and trying to keep up to date on the latest treatments as well as having to educate myself—it’s debilitating. This is why so many of us consider being ill a “full-time job”, because it’s more than just coping with our symptoms.
I felt like I needed a break from the fight
It takes so much work having to balance normal day-to-day responsibilities alongside educating myself on medical terminology, reading bloodwork results, managing symptoms and essentially doing extensive research on the sidelines to try and speed up the diagnosis process and get to the bottom of everything.
But when a year passes with almost no progress, well, it’s no wonder I’m so burnt out and fed up. I felt like I just needed to press pause and take a moment to just let whatever my life is, be what it is. I needed a break. So I did just that. I essentially just allowed myself the space to be sick and accept that this is where I’m at right now.
I stopped doing research. I stopped caring about a diagnosis. I stopped everything. I just woke up and allowed every day to be what it was. Of course, this couldn’t last forever. But I was so burnt out that I felt like I didn’t have the strength to move forward anymore.
After a few weeks, I was ready to start over
As I always say, I think it’s healthy to let ourselves temporarily give up from time to time. Sometimes what’s best for our emotional and mental health is to give ourselves the space and permission to feel that negativity fully for what it is, sink into it, accept it and then move on. It took me a few weeks to move through the motions of this burnout, grieve this last year, allow myself to take a break from being strong and just exist until the fog lifted.
Eventually it did and I was ready to get back on the horse and push on. I felt like I had a clearer mind going into everything and even started reviewing old bloodwork and testing to start from scratch and relearn everything I had learned in 2021.
Patient burnout is real, and know you’re not alone
This type of burnout is both something that I think all of us can relate to, but is also something that each individual experiences differently based on their own situation. Being a patient and living in survival mode until we finally receive a diagnosis is a type of exhaustion no able-bodied individual will ever understand.
Awaiting a diagnosis can be an incredibly long journey for most, and sometimes it feels like it will never end. I think that experiencing this burnout is only normal for us and that it should also be talked about more. Just know that if you, too, have experienced this, you aren’t alone, and that it will pass.
How much about your AS do you share with others?