Practicing self-compassion while facing SMA challenges
My gastroenterologist shared an important reminder during my recent visit
“Alyssa, this is the best you’ve ever looked to me,” my gastroenterologist recently exclaimed during a routine appointment.
Though I hadn’t felt my best internally, I took her word for it. After all, she’d been my doctor for more than a decade, and this was the first time I’d heard her speak these words.
Until a few years ago, my gastrointestinal (GI) appointments were often grim. My stomach caused me a lifetime of poor nutrition and trouble, and I’d usually leave the appointments feeling like a failure. Despite how hard I tried to make myself better, spinal muscular atrophy (SMA) always had the upper hand. More often than not, it toyed with my emotional well-being.
Fortunately, my GI issues improved tremendously after getting a nasojejunal feeding tube a few years ago. Getting adequate nutrition that bypasses my stomach and goes into my small intestine has been an answered prayer. In fact, my trips to the GI doctor are more pleasant and routine than ever. Nevertheless, my mental health continues to suffer as other physical health problems persist.
Low iron levels, vestibular migraines, and feelings of sluggishness are a few of the issues at the top of my long list of things to tackle. Some days, facing them feels daunting. Whether it’s another long trip to the hospital, email follow-ups regarding abnormal lab results, or new medications that inevitably cause side effects, there’s always a challenge to be dealt with. There’s always a reason to feel defeated.
A reminder to practice self-compassion
Living with SMA is often a balancing act. If I’m not tending to my body’s needs, I’m trying to maintain as much quality of life as possible and live like a normal adult. But this ongoing battle takes a toll on my mental health.
However, my doctor’s recent compliment offered me a fresh perspective that allowed me to refocus on the issues at hand.
In response to her telling me how great I looked, I mentioned something about feeling like poop on the inside. Because she’s my gastroenterologist, I can never refrain from making a poop joke when I see her. After we both chuckled, she agreed that I had much to deal with. But then she reminded me I’m doing a great job. I’m taking the initiative. I’m remaining vigilant. I’m doing all the right things I could be doing for myself. In an indirect way, she reminded me that I’m making more progress than I realize.
I left that appointment with more confidence than I’d felt in a while. Though my symptoms didn’t change, my feelings toward them did. I recognized that while my mental health will always be a work in progress, I need to give myself a little grace. I need to practice more self-compassion.
When the complexities of SMA become all-consuming, I admit it’s easy to lose sight of how far I’ve come. Instead of focusing on the little victories in my day, I focus more on what is still going wrong. It’s a vicious cycle that’s hard to break free from when I’m deep in the trenches of SMA.
Thankfully, I have everyday cheerleaders in my life, such as family, friends, and even my gastroenterologist, who are there to offer encouragement along the way. Though challenges remain, they remind me that I’m stronger than I give myself credit for.
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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