Managing My Physical Health Takes a Huge Mental Toll

I got out of my van at the hospital for what felt like the millionth time that month, and I could hear the deafening sound of a helicopter landing above me. Though hundreds of feet above, its whirling sound ricocheted off the buildings and echoed down below. The sound vibrated in my chest and pounded inside my head. Somewhere up above me was a person who had to be flown to the hospital due to a medical emergency. The intensity of it all only added to the anxiety I usually feel when I arrive at the hospital.

These days, the majority of my outpatient procedures take place at Boston Children’s Hospital. As a result, I’m there frequently. It’s usually an all-day affair for me — and for my parents, who accompany me. There’s traffic and long drives, wait times, and other delays. Oftentimes, the logistics alone become time-consuming and exhausting.

Even so, I’m very fortunate. After all, I’m in my 30s. The hospital should have kicked me out a long time ago. But given my rare diagnosis and the out-of-the-box thinking that’s required with my care, my team of doctors feels it’s best that I stick around. I agree. I have the utmost respect and praise for my team and am grateful for their care.

Nevertheless, these visits still trigger an emotional strain that often outweighs the physical toll.

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As I entered the hospital that day, the noisy helicopter apparently wasn’t enough for my brain. My anxiety escalated as I passed the emergency room filled with families. There was a long line to check in. I could see children coughing and snuggling up to their mothers. I hated that I had to be there, that I had to pass that room and see children suffering, knowing all too well what that’s like. And I hated that I was heading to yet another stressful procedure.

I began to reflect on why I was feeling that way. Going to the hospital has been my routine for decades, but I never experienced anxiety until the last few years.

I realized that my health has become even more complex, impacting my life in more ways than I ever imagined. Simply put, I’ve been through a lot in the last few years. These health issues require a great deal of time and attention. There are more procedures, more appointments, longer care routines, and constant discussion with my providers about how to manage my care more effectively.

I know this is the name of the game when you have SMA, but it’s incredibly stressful at times. Always feeling like a patient first and a person second is exhausting. And the mental and emotional toll it takes on me — and those around me — can quickly become overwhelming.

There’s no manual for how to live with a rare disease. I can read up on symptoms and treatments. I can learn what to expect from my body. But there’s nothing that tells me how to cope. There’s no manual for how to relax during procedures or stay calm about new health issues or heal from past medical traumas.

As I sat in the waiting room that day anxiously awaiting my procedure, I realized that the mental toll of my condition is often more serious than the physical toll.

My body has taken a beating over the years. But it’s my mental health that seems to take the longest to recover.

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.