As we look back on 2023, let’s be proud we prioritized getting rest
As porphyria patients, we should avoid comparing ourselves with others
I’d like to give a shout out to everyone who prioritized nourishing their bodies and minds in 2023. Whatever that might look like for each one of us, let’s all hold our heads high.
In the last couple years, the severity of my acute hepatic porphyria (AHP) and related chronic fatigue and migraines kicked up a few notches. I began keeping track of the days I spent in bed, which totaled more than any previous year. Now in December, I look at that number and initially feel judgment. It’s unfair, but I was raised to be productive, deadline-driven, and accomplishment-oriented.
Staying in bed doesn’t mean I’m lazy. When I’m ill enough to stay in bed, I can’t let my head go to a place of old expectations and judgment. Instead, getting comfy in a dark room or calling a friend for a ride to the clinic in those moments is a gift of self-compassion.
A note on family gatherings
Year-end family gatherings are an easy place to regress back to that period of my life when I felt the need to achieve things just to have self-worth. When I’m surrounded by friends and family succeeding in their jobs, having children, or working on a competitive fitness goal, I remind myself that they don’t face the health challenges I do. If they were forced to appease AHP day in and day out, their lives might more resemble my own.
Gone are the days when I pushed through despite my symptoms. I’m done hiding my barf bag under my desk at work. I no longer feel guilty when I have to cancel an activity at the last minute due to pain. No one is disappointed when I prioritize my health over everything else.
Not everyone will understand the importance of caring for our bodies. Our loved ones may be concerned if we explain the breaks we need or the sheer number of doctor appointments we have. They may say, “It’s nice you have the time to do that.” But we can choose to smile big and nod. We deserve to feel confident about the investment we made in taking care of ourselves this year. It’s not always the easy choice.
A reminder
It may seem like we have nothing to show for the days or weeks in 2023 that we spent in bed or in the hospital, but that’s not true. Even if it seems like the rest of the world thinks this way, it will trip us up. Time spent nourishing our bodies and minds is never a waste.
You’re not lazy, dramatic, or overreacting. You live with a rare disease that produces a series of acute attacks and chronic symptoms. It’s a life lived in caution, necessitating care with everyday decisions like bedtimes and meals.
You know this in your heart, and just in case you don’t have a friend in the porphyria community to remind you, bookmark this column.
Let’s be proud of the time we spent resting this year. It was the best choice we made for our bodies and minds.
Note: Porphyria News 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 Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.
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