A Holiday Survival Guide for People Living With Porphyria
How to successfully navigate the holidays with a chronic illness
Holiday hacks are tips to make the hustle and bustle of the holiday season easier. I can’t scroll through Instagram or turn on the TV now without coming across them. None mention the added challenge of managing a chronic illness.
The first few years I lived with acute hepatic porphyria (AHP), I didn’t prepare well for the holiday season. I told concerned loved ones I’d get better soon, because that was emotionally easier than trying to explain an incurable disease I hadn’t begun to accept. Additionally, I needed to better evaluate how I spent my time and conserved my energy, but I wasn’t ready to admit I couldn’t do it all.
I’ve never heard of a Hallmark movie about someone like me. It’s not that there’s no societal expectation for those navigating the holidays with a rare and invisible illness; it’s that the notion of doing anything other than partaking in the festive grind machine is shunned. There’s already extra pressure around the holidays, and chronic disease only complicates things further.
As I hung greenery over my front door and strung lights on the tree, I got to thinking about how I try my best every year to participate in festivities in ways that don’t compromise my health and well-being. I decided to reach out to friends with AHP across the country, who are my most trusted sources of information. Over text, we talked about tactics we’ll use to have a happier holiday season.
What follows is a holiday survival guide for people with chronic illness, by people with chronic illness.
1. Pace yourself.
My body doesn’t do well if I stack activities without rest in between. But we don’t have to say no and miss events entirely.
“Maybe I’ll go for a shorter amount of time,” Nicole Castellano explained. “I’ll still see loved ones, but it doesn’t take too much out of me.”
2. Set expectations.
“I cannot plan to have energy,” Gudrun Stephens said. “So I don’t know who I can visit.”
When I make plans with others, there’s only a 60% chance that I’ll feel well enough to hang out on that day. My friends know that, but the family members I see once a year don’t. As hard as it can be to acknowledge our limitations, it’s crucial to clearly communicate our realities, especially during the holidays.
3. Spot clean.
Sharon Dill doesn’t let AHP stop her from throwing parties; instead, she creates some boundaries for herself.
“I don’t wear myself out by scouring the house,” she explained. “I make sure my bathrooms are clean and shiny, but no one will care if my laundry baskets are overflowing.”
If you’re hosting this year, save your energy for friends at the event; don’t spend it all on the cleaning beforehand.
4. Eat conveniently.
Big, festive meals are part of what makes the holidays special, but working in the kitchen can zap our precious energy. There’s no shame in buying pre-made food; ’tis the season for convenience.
“I prep what food I can in advance, or get delivery,” Elizabeth Vos said. “Ask for help, and be open to receiving help.”
Elizabeth’s last piece of advice is invaluable, and something I’m still working on.
5. Put your health first.
Culturally, we’re taught to strive for a Folgers-commercial, Christmas-morning feeling. Anything less and the stress sets in. Unlike some of our loved ones, we can’t cope with a glass of wine. We also can’t afford to lose a night of sleep or miss a meal. This tactic is the most important on the holiday survival guide.
6. Nourish yourself.
Just by living with AHP, we’re resilient. Not only do we survive attack after attack, but we continue to thrive and grow. We’ve all found ways to center ourselves and find calm amid the chaos of our symptoms. Whether it’s taking a slow walk in the snow, lighting a fire and reading a book, cuddling under a weighted blanket and watching your favorite holiday movie, snuggling with your fur baby, baking some cookies, or calling your best friend to laugh, make a list of the ways you care for yourself and lean on it.
There’s no need for a holiday movie about someone living with a chronic disease. At its best, it’d be boring, and at its worst, it’d be ableist — a cinematic battle of overcoming illness and finding the true meaning of the season in the process. I’ll be the first to admit, it’s not something I’d care to see.
However you find yourself celebrating this holiday season, find compassion for your body. The added challenges this time of year brings are hard on everyone, especially those of us with a chronic illness.
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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