Thriving Through the Holidays with Chronic Illness
The holiday season is a time of joy and connection—but for those living with chronic illnesses like Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and gastroparesis, it can also bring unique challenges. Fatigue, food intolerances, pain, and sensory overload often combine with emotional hurdles like feeling like a burden, dealing with insensitive comments, or coping with social pressures.
Navigating the holidays requires both practical preparation and emotional resilience. With some thoughtful planning, strategies for handling the mental load, and time for recovery, you can enjoy the season on your own terms while prioritizing your well-being.
Preparing for Holiday Plans
Set Boundaries and Communicate
Acknowledge your limits: Be honest with yourself and others about what you can realistically handle. Share your needs with loved ones ahead of time to set expectations.
Say no when necessary: It’s okay to skip events or activities that feel too demanding. Your health comes first, and those who care for you will understand.
Focus on what matters most: Prioritize the gatherings or traditions that are most meaningful to you and let go of the rest.
Plan for Accessibility and Comfort
Scout the location: Ensure the event space is accessible and consider any accommodations you might need, like comfortable seating or a quiet room to rest.
Pack a self-care kit: Include medications, electrolyte drinks, antihistamines, a heating pad, braces, or anything else you might need to manage your symptoms.
Prepare Mentally and Emotionally
Set intentions: Think about what you hope to experience, such as connection or joy, rather than trying to meet unrealistic expectations.
Reframe negative thoughts: If you’re worried about being a burden, remind yourself that your loved ones want you there because they value your presence.
Enlist an ally: Ask a trusted family member or friend to check in with you during the event and support you if things feel overwhelming.
At Holiday Events: Managing Physical and Emotional Challenges
Combat Fatigue
Take breaks: Step away to a quiet space when you feel overwhelmed or tired. Don’t hesitate to leave early if you need to.
Pace yourself: Avoid cramming too much into one day, and consider attending only the most meaningful portion of the event.
Navigate Food Intolerances
Bring your own food: Prepare safe dishes that align with your dietary needs, whether it’s a bland soup for gastroparesis or allergen-free options for MCAS.
Communicate with the host: Let them know about your restrictions in advance and offer to contribute a dish everyone can enjoy.
Eat mindfully: Take small bites, chew slowly, and listen to your body to avoid triggering symptoms.
Manage Pain and Sensory Overload
Use stabilization tools: Wear braces or kinesiology tape for hypermobile joints and use tools like a TENS unit or heating pad to manage pain.
Reduce sensory input: Bring noise-canceling headphones, sunglasses, or other tools to help with sensory sensitivity.
Know your limits: If the environment becomes too loud, bright, or chaotic, take a break or step outside for fresh air.
Handle Social Pressure and Comments
Holidays often come with well-meaning but sometimes hurtful comments like, “You don’t look sick!” or, “Have you tried X?”
Prepare responses:
For “You look fine!” try: “Thank you, but chronic illnesses like mine aren’t always visible.”
For advice you’ve heard a million times: “I appreciate your concern, but I’m following a plan with my medical team.”
Redirect conversations: If someone is overly intrusive, politely steer the topic elsewhere: “I’d rather not focus on my health today—how have you been?”
Let go of perfection: If someone doesn’t understand your limitations, it’s a reflection of their perspective, not your worth.
Recovery After Holiday Events
Rest and Replenish
Plan downtime: Schedule recovery days after events. Use this time to sleep, hydrate, and allow your body to recuperate.
Hydrate strategically: Replenish fluids and electrolytes to combat post-event fatigue and POTS symptoms.
Soothe Your Body
Pain management: Use heat, cold, or gentle stretching to ease stiffness and discomfort.
Stick to safe foods: Focus on easily digestible meals to give your digestive system a break after indulgent holiday fare.
Process Your Emotions
Celebrate your effort: Even if the event didn’t go perfectly, acknowledge the courage and strength it took to attend.
Let go of guilt: If you couldn’t participate fully or needed extra support, remind yourself that your health is a priority, not an inconvenience.
Reflect and Learn
Adjust for next time: Consider what worked well and what didn’t so you can make adjustments for future gatherings.
Focus on gratitude: Reflect on the positive moments—whether it was a kind conversation, a laugh, or simply showing up—and savor them.
The holidays can feel daunting when you’re living with chronic illness, but they don’t have to be overwhelming. By preparing for both the physical and emotional challenges, advocating for your needs, and practicing self-compassion, you can find joy in the season without sacrificing your health.
Remember, you are not a burden. Your value is not tied to what you can do or how much you can participate. Your presence matters to the people who love you, and taking care of yourself is the best gift you can give to both yourself and them.