Finding Somewhere Between Burnout and Balance

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by Alyssa Silva |

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I’ve been having trouble coming up with a topic for this column. Perhaps I shouldn’t open with that, but stay with me here. At first, I blamed it on writer’s block. Other than my last column, I haven’t written much in the past two months due to my hospitalization. Any writer knows that you need to consistently practice your craft if you want to be productive.

After mulling it over, I decided it wasn’t writer’s block, but brain fog. I haven’t been sleeping. My body is still fighting hard. And I have so much on my mind. However, I’ve been able to focus on other tasks and am still present at work. Sure, my mind feels a little cloudier these days, but I’m still able to concentrate. These were just excuses skewing my perception of the real barrier in front of me.

I’m experiencing SMA burnout.

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I didn’t know it was even possible to be burned out from your own disease. But the past few months have been dedicated to my physical health and nothing else. I’ve felt as if I haven’t had a moment to breathe. So this is simply the truest way to explain how I feel right now.

Aside from managing my care, I play an active role in the disability community. I write here and manage the SMA News Today Forums. I openly discuss my life and disability-related topics on my Instagram and my blog. I run a nonprofit organization that raises money for SMA. My disability is a big part of who I am and what I do.

I’m grateful for these opportunities and experiences, but what happens when that disability is the very thing I wish to shut off for a little while? What happens when I need a break from something I can’t take a break from?

Many people in the disability and chronic illness communities will say that managing their condition is a full-time job. And frankly, I couldn’t agree more when I think about living with SMA. However, with jobs, you get time off. You get personal time and vacation days. You get weekends to clear your head and moments when you can put your job aside to recenter yourself.

Unfortunately, these luxuries don’t exist for those with chronic conditions like SMA. And right now, I desperately need a personal day from my own disease.

It turns out that the reason why I’m still able to show up for my job and concentrate on other tasks is because I escape my reality for a while. My mind is focused on thoughts that don’t include fears of the unknown, conversations with doctors, managing my new medical care, and so on. It’s my version of a break, my very own “work vacation.” All I need is a piña colada by my side. If only my stomach would allow it!

Lately, burnout has looked like emotional outbursts, avoidance of SMA-related work, and anxious, sleepless nights. As hard as it is for me to admit some days, living with SMA will always be a full-time job. And people get burned out from their jobs sometimes. While mine isn’t the kind of job I can quit, I have to remind myself I can still take breaks. In fact, I deserve to take breaks.

These feelings I’ve been having lately are reminding me of the importance of balance. Yes, my body is requiring a lot more from me than ever before. And with so much still unknown, it’s hard to face my needs some days. But I need “me time,” too. I need to focus on things that have nothing to do with my health.

Today, this column is a big step. I’m facing SMA, and I’ll likely spend the next few hours drawing — something I can get lost in for a while. In due time, in between the burnout and the breaks, I will get better at striking a balance. I will slowly pick myself up again.


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.

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