Why is listening to my body when I’m ill so hard to do?
When I'm sick, I always downplay the symptoms
“No, I’m totally fine” are often my famous last words when I’m actually not fine at all.
Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my intuition that tells me something is wrong. As it turns out, it’s surprisingly easy to gaslight myself into thinking otherwise when I have a rare disease like spinal muscular atrophy (SMA). Or at least that’s what I keep telling myself each time I’m in the same situation all over again.
Living with SMA comes with a slew of symptoms I’ve grown accustomed to. Chronic fatigue causes brain fog, muscle weakness, and lack of motivation. My daily limitations impose on my ability to do everyday tasks. Pain and discomfort set the bar really low for what a good day is supposed to feel like.
In other words, SMA makes feeling lousy seem like a “normal” baseline. So, when an illness comes, it becomes increasingly difficult to differentiate between a normal symptom day and an actual illness.
My body deserves better
I recently fell into the same old pattern when I got sick for the first time in over a year. It started when my fatigue felt unusually worse. I can typically fight through the sluggishness, but this time, I figured it was due to a lack of daylight. Here in New England, the sun sets around 4:30 p.m. this time of year. My body always has the toughest time adjusting, so I require extra sleep and rest. Knowing this, it was easier to justify my fatigue by blaming Mother Nature.
Then the sore throat came. Instead of taking it as a warning sign, I brushed it off. I get chronic ear infections due to my eustachian tubes not functioning properly. Sometimes these infections trickle into my throat, causing soreness and mild swelling. Since I had one at the time, it wasn’t abnormal for my throat to be hurting. I decided to give myself the benefit of the doubt.
As the week progressed, so did my nausea. Living with chronic gastrointestinal issues, it was easier to think that I was simply having an off week. After all, most weeks are off weeks, so I chose to fight through it.
My symptoms never matched one specific illness, which made it more difficult to determine whether or not I was sick. If it’d been more straightforward, if I knew I had a respiratory infection or a stomach virus — something I could identify — I would’ve been more proactive. I would’ve stopped gaslighting myself and started being kinder to my body.
Instead, my symptoms worsened. By putting the blame on SMA and telling myself I was fine, I wasn’t taking the right steps to heal. It wasn’t until a course of antibiotics for an abscessed tooth later that week that my other symptoms started to diminish. Only when my body responded to the medication did I realize that it wasn’t just a “bad week” I was having. I was definitely sick.
In hindsight, I should’ve known. I’m shaking my head as I type these words because it was so clear. Yet, I struggled to make sense of it while it was happening. Alas, I keep gaslighting myself without realizing it, understanding what I’ve done only when I’ve pushed myself too far. Sometimes I truly am my own worst enemy.
As I reflect on my recent sickness, I know my body deserves better from me. I know I need to allow myself to slow down and trust my intuition. Learning to do so won’t only be about preventing an illness from worsening, it’ll also be about learning to respect the signals my body gives me and giving it the kindness it deserves.
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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