The Diagnosis & Hope Tempering Fear
As I sat in the sterile, white-walled doctor's office, the air felt heavier with each passing second. My heart raced, and my palms grew damp against the armrest of the chair. “You have a diagnosis,” the doctor told me. “It’s Inclusion Body Myositis.”
As much as I had been wanting answers to my ongoing issues, I was not really prepared for what I was hearing. Inclusion Body Myositis (IBM), as you likely know, is a progressive neuromuscular disease that has not only no cure but also no real treatment. What I was hearing was that in addition to all the trouble I was having with my hands and fingers, I would eventually also be unable to walk or stand on my own. This news was devastating.
How could this be happening to me? I had always been so diligent about taking care of myself, and yet here I was, facing a diagnosis that turned my world upside down. The shock rendered me speechless, unable to voice the countless questions and fears swirling within.
As the initial shock began to wane, fear stepped in to take its place. Fear wasn't unfamiliar to me, of course, but this was different from any fear I’d experienced before. It stemmed from the unknown of a process that I had never anticipated. It was born from the unknown, from the uncharted territory of a diagnosis I had never anticipated. It gnawed at me and kept me awake. I’ll be honest, some nights it still haunts me.
I had questions, so many questions. What does this diagnosis mean for my future? Will I have to make drastic lifestyle changes? What about my loved ones? I felt vulnerable. I felt mortal - truly felt mortal for the first time.
I started seeking information and educating myself about my condition. Knowledge, I discovered, is a powerful antidote to fear. The more I understood about my diagnosis, the less daunting the uncertainty of it all seemed. Sure, it’s impossible to guess exactly what my disease process will look like, how long I’ll be able to continue walking, and whether or not my trouble swallowing (dysphagia) will improve or lead to a feeding tube. But putting my mental capacities to work to empower myself meant that these uncertainties no longer paralyzed me. I also connected with support groups and individuals who also had IBM and who had experienced their diagnosis much as I had. I felt less isolated and more empowered.
As time passed, the shock and fear of the diagnosis gradually began to loosen their grip, and while the diagnosis was an unexpected detour in my life’s journey, it wasn’t the end of the road. With each passing day, I learn to navigate my new reality, focusing on the opportunities to grow, adapt, and cultivate resilience that IBM invites me to embrace. While fear still lingers, it is tempered by hope, a hope born from the realization that I have the inner strength to face whatever challenges lay ahead.
As always, I’ll end with a quote from the Fellowship of the Ring that helps me when I find myself wanting to change things outside my control.
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
