Managing My Health Can Be Exhausting, and That’s OK
As I was leaving a doctor appointment a few months ago, I reached my breaking point. In fairness, it was long overdue.
For weeks, I could feel the tension bubbling inside me. Anxiety would greet me at the office’s main entrance and sit in the empty chair beside me in every room. Despite its presence, I kept my composure as best I could.
Finally, after the 10th week in a row of making the same trek to the same doctor for the same health issue that to this day remains unresolved, I broke down on the car ride home.
Caring for my physical health has always required extra effort. I didn’t sign up for this, but it comes with a condition like SMA. Fortunately, I have a remarkable team of doctors who work closely together on my case and always have my best interests at heart. Between emails, last-minute telehealth appointments, and phone calls, my team is always available and kept apprised of my many health updates. Unfortunately, due to the complexities of my unique needs, solving my health issues has never been easy.
On the car ride home that day, I realized I had become consumed by my persistent symptoms and doctor visits. My breakdown indicated that I was burnt out from my own body.
My brain was in hypervigilance mode. It was constantly trying to prepare me for something to go wrong, notice nagging symptoms, and self-diagnose whatever I was experiencing. I was barely managing to schedule appointments, work, take care of my health, and have time for my personal life. Simply put, I was exhausted — physically, mentally, and spiritually.
This revelation prompted me to reflect on these feelings I had been experiencing for some time, and understand how to process them better.
The fact of the matter is this: Managing life with SMA is incredibly challenging at times, but coming to terms with these feelings and learning to accept reality can be even more challenging. Knowing this makes me weary, like I’m not equipped to handle my own life. Yet, the more I invest in my mental health and process how I’m feeling, the more I see with clarity.
And with clarity, I’m reminded that it’s OK to not be OK all the time. After all, I’m a human being. Complex emotions are a package deal. What I feel, when I feel it, how it feels — it’s all valid.
Some days, especially lately, I don’t have the energy to manage my health. But instead of ruminating on this feeling, I’m acknowledging that it’s OK. In doing so, I’m learning to accept how I feel, regardless of what I feel, and understanding that this is key to moving forward. It isn’t a sign of weakness, but a reminder I need to harness, so that my inner strength can lead the way. It will always guide me to wherever I need to be.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
Hi Alyssa- I’m the mom of an adult with SMA2. I’m curious who’s on your team of healthcare providers? We’re in process of establishing a care team.
Thanks for your article- Marybeth
Hi Marybeth. I see the team of doctors over at the SMA clinic of Boston Children’s Hospital.