Surviving the Holidays With ME/CFS
The holidays, with their festivities and traditions, are often a time of joy, connection, and indulgence. Yet, for those of us managing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), the season feels more like an endurance test.
As both a survivor of ME/CFS and a former clinician, I know too well the delicate balance between participation and preservation. This guide is a roadmap for surviving the holidays while prioritizing your health, energy, and well-being.
What Do the Holidays Mean to You?
Let go of the cultural narrative that holidays must be fast-paced and action-packed. Embrace a version of the season that aligns with your current capacity.
Reimagining Traditions
Choose moments over marathons.
Rather than trying to do everything, focus on the most meaningful moments. For me, it might be the quiet satisfaction of putting together a jigsaw puzzle and reflecting on the year. Albeit, doing puzzles is harder now that I have a highly sociable cat, Max!
But being quiet, touching the pieces, and having the satisfaction of putting a few of them together is why I keep coming back to my stack of puzzles.
Rather than trying to do everything, focus on meaningful moments that resonate most deeply with you
Focus on people, not perfection.
Connection doesn’t need to happen in a crowded room. A heartfelt phone call or a video chat can be just as fulfilling without the physical exhaustion.
Setting Boundaries
Communicate your needs to loved ones early. For example:
“I’d love to join you for dinner, but I’ll need to leave after dessert to rest.”
“I’ll attend virtually so I can participate without risking a flare-up.”
“Would you be willing to drive me home early if I crash?”
These boundary-setting conversations can feel awkward, but they prevent misunderstandings and preserve your well-being. They also continue to teach those in your life that you always require an alternative plan.
Prevent Holiday Burnout: Mastering Your Energy Management
Setting boundaries isn’t the only way to protect your precious energy. Most of us with chronic illnesses have a reduced capacity to store and maintain a consistent level of energy, which makes it even more important to stay true to our management strategies. The overall goal? To prevent post-exertional malaise (PEM), which can show up after the holidays are over. Please go easy and listen to your body.
Everyone’s condition and journey are different, but if you haven’t found your rhythm yet, here are some concepts to keep in mind as you work to get more regulated. You can even use these to explain what you’re going through to others.
The Spoon Theory
The Spoon Theory, created by Christine Miserandino, is a metaphor for the limited energy levels that people with chronic illnesses experience. Each spoon represents a unit of energy that can be spent on various daily activities.
Someone with ME/CFS, for example, might only have a few spoons each day, making it crucial to carefully ration energy when completing tasks.
Life With a Low Battery
The Bateman Horne Center offers a helpful way to look at energy management. Imagine your body is like a smartphone, and all the apps require energy usage to function.
But whenever we forget to charge the phone and reach low battery, we have to be more selective with which apps we use to prevent our phone from shutting down. Like the Spoon Theory, we need to be discerning about which tasks are most vital and which can be let go.
The Midnight Effect
The Midnight Effect, my own energy management metaphor and visual, focuses on the disruption of time as you negotiate your energy levels. Inspired by the Disney Cinderella story, the Midnight Effect is the unpredictable moment when your physical, emotional, or mental energy is depleted, forcing you to pause, retreat, or reset.
This is exactly what happened to me the first night I got sick. I felt something shift in my body, like someone abruptly turned off a light switch. One minute I was dancing at the ball in a beautiful gown, and the next I was fleeing the scene in rags. Everything was reset, and not in a good way.
Unlike a linear clock, midnight strikes randomly, making it impossible to plan or control when they happen. Time becomes non-linear for us. Each day is a series of resets. You feel like you’re at the mercy of an unseen ticking clock, never knowing when you’ll be forced to stop everything and “flee the ball” when the clock strikes midnight.
Because ME/CFS is invisible, the only thing the people in your life may see is you stopping whatever activity you are trying to complete when your mitochondrial energy suddenly drains to zero.
By proactively using the Cinderella Midnight Effect metaphor to explain what life is like, and with the use of “midnight” as a safe word when this event occurs, people in your world will hopefully begin to better understand what’s happening in these moments. They also might start proactively suggesting alternative plans, taking the burden off of you.
All of these concepts will hopefully help you become more comfortable and gentler with yourself when you need to change plans. They will also help others understand the invisible world you manage. Being understood is so critical, yet so very hard.
Energy Conservation Strategies
Prioritize calmer holiday activities: Watching a holiday movie (Love, Actually is my favorite!) or decorating a small corner of your space can provide festive joy without overexertion.
Plan built-in rest periods: Schedule rest before and after activities. If you’re attending a holiday lunch, for example, reserve your morning and evening for recuperation at home.
Say “yes” selectively: It can be hard to say no to friends and family. But try to only participate in activities that contribute to your well-being or are essential, and let go of the rest.
Tools to Save You Effort
Want to eliminate unnecessary shopping trips and wasted energy?
Do online shopping for Christmas gifts this year. And look for a grocery store near you that offers delivery to your home through a service like Instacart.
If cooking feels like a mountain to climb this year, consider trying a ready-to-eat meal delivery service like Factor, or ask a loved one for help.
Holiday Survival Toolkit for Health Crises
Even with the best planning, the unpredictable nature of ME/CFS means flare-ups may happen. The key is preparation, which minimizes stress when the unexpected strikes.
Pack an Emergency Essentials Kit
Assemble a small bag to take with you or keep at hand:
Essential documents: Insurance card, ID, medical history, and a list of medications.
Comfort items: A travel blanket, earbuds to block noise, and an eye mask.
Emergency snacks: Low-energy options like protein bars or electrolyte packets can help during long waits.
A quick note about food: holidays are a time when your diet will naturally change. And you don’t know how your body is going to react or feel after these meals. Will you have the same level of energy or less? I routinely try to travel with the food I eat for breakfast so I at least start out each day the same way.
2. Prepare Questions for Urgent Care Providers
Prepare a list of questions while you’re feeling well and clear of mind. This will make an unexpected urgent care visit as smooth as possible.
Keep these questions on hand in a pinch, whether in your phone notes or with the other essential documents in your emergency essentials kit.
Prioritize questions that focus on immediate care and prevent repeat visits:
“What’s the best way to manage symptoms at home?”
“How can I prevent this from worsening?”
“What are follow-up or next-step options if symptoms persist?”
3. Schedule Follow-Ups & Get Care Instructions
Before leaving your appointment, schedule any necessary follow-ups. Request clear, specific instructions on home care and symptom monitoring.
By having a list of important questions and documents, an emergency kit, and urgent care centers near you with flexible weekend or holiday hours, you’ll be less stressed about the unpredictability of your condition.
Find Community, Even From Afar
Isolation can feel amplified during the holidays. Maybe you’ve lost someone you love, or deal with physical limitations that prevent you from attending gatherings.
Just know that meaningful connection is still possible with a bit of creativity and openness.
Virtual Support Groups & Communities
Here are some reliable communities for chronic illness survivors:
#MEAction: Join their virtual support spaces for ME/CFS and long COVID, or attend online events to connect and share experiences.
Inspire: A health-focused platform for finding groups tailored to specific health conditions.
The Center for Chronic Illness: Offers free, virtual groups for anyone impacted by chronic illness.
The Mighty: Brings people together over shared interests, whether specific health conditions or general mental health guidance.
Meaningful Solo Activities
Oftentimes, solitude can be very empowering and fulfilling.
Use the time to write holiday letters. Share updates or gratitude with friends and family. Or get outside to stand in the sun for even five minutes. This can be nurturing and empowering.
Maybe consider creating a personal ritual. For example, set aside time before the year ends to reflect on what you’re leaving behind and your hopes for the new year.
Make Your Own Holiday Joy: Finding Peace in Solitude
The holidays don’t need to look like anyone else’s to be special or rejuvenating. Create traditions that match your energy and values.
Small But Impactful Ideas
Cook a simple holiday meal.
Choose one dish that feels special but isn’t exhausting to prepare.
Decorate minimally.
A string of fairy lights or a single ornamented branch can brighten your space without taxing yourself.
Savor a mindful activity.
Journaling, meditating, or reading seasonal poetry can offer a quiet joy unmatched by bustling parties.
Why These Rituals Matter
When I was first adjusting to life with ME/CFS, small traditions gave me a sense of control and comfort.
After exploring what works for me, my two holiday rituals are to put up individual candle lights in my front windows and to send holiday cards to a small list of friends.
The latter takes more time, but I turn them into a combined holiday/New Year’s card and tell myself that I do not have to get them sent until the end of January. I cherish my friends and want to at least connect with them once a year.
Bonus Resources to Lighten the Load
Navigating the holidays is easier when you have the right support. Some tools to consider:
Meal delivery services: Services like Factor or local options can save you time and energy. For simple solutions, try grocery delivery apps like Instacart or Amazon Fresh to restock essentials.
Medical apps: If your primary care provider offers it, use apps like MyChart to access your medical records, refill prescriptions, or communicate with providers without leaving home.
Pre-made toolkits: Consider creating a “holiday survival box” filled with essentials like a heating pad, a cold or hot eye mask, a journal, an e-reader, calming teas, and quick snacks.
Task Outsourcing: Apps like TaskRabbit can connect you with people who can assist with holiday errands, decorating, or light cleaning, saving you time and energy.
These bonus resources can help you conserve your body battery while still enjoying the parts of the season that matter most to you.
Surviving the Holidays: Meaning Over Perfection
As someone who has transitioned from a demanding career to living with ME/CFS and advocating for invisible illness patients, I’ve learned that surviving the holidays isn’t about making things perfect. It’s about making them meaningful. They can be quieter, slower, and still fulfilling.
This season, give yourself the gift of grace. Allow yourself to celebrate in a way that reflects your current reality, not anyone else’s expectations.
For more insights, tips, and support on life with an invisible illness, you can see all my informational articles here. Together, let’s make this holiday season one of peace.
