As the cold sets in, darkness falls, and the busy holiday season commences, many people feel vulnerable. Those of us living with chronic conditions may feel especially so. Grief for what and who have been lost arises, commercialization overwhelms, and our physical bodies need more care than ever.
How can we navigate this season as gracefully as possible, being generous and gentle with our bodies, hearts, and minds? And in what ways can we best support the people in our lives who are most affected?
The Patient Leader Network partnered with Health Story Collaborative and Unfixed Media, to start a discussion around navigating the holidays while living with a chronic, rare, or mental illness. Catch the full replay below to hear three patient leaders share their stories of struggle and resilience during the winter holiday season.
🧠 Allow yourself to pause and check in – The hustle and bustle of the holidays leave everyone tired, and adding an illness on top of that can make things extra challenging. Give yourself time to check in more frequently this month, getting candid with how you feel both physically and mentally so you can plan ahead.
💭 Brainstorm your boundaries – For some, the holidays can be a challenging time for setting boundaries. Remember that you have the right to create your boundaries. This might look like setting specific durations of time to spend with certain individuals or even calling family members beforehand to educate them on what you may need or how you may be approaching the holidays.
🗺️ Create a plan – Crafting a plan beforehand can be a helpful tool when it comes to navigating the holidays. While we can’t control everything, having a plan mitigates the logistical and emotional energy that goes into the day itself. As a patient, it’s necessary to plan ahead with any medications, treatment needs, and ensure you have all the spoonie essentials!
🤝 Remember, you aren’t alone – It’s normal to feel overwhelmed during this time of the year, the holidays are challenging for many, and our chronic conditions only add to the stress. Remember that you are not alone and there is a whole community of patients and caregivers facing a similar battle, ready to welcome you with open arms.
Meet the Panelists
Shaler McClure Wright
Shaler McClure Wright is fascinated with the mysteries of the creative process, the healing power of creativity, and the creative synthesis of method acting, intuitive learning, and depth psychology. A graduate of Wesleyan University and The Actors Studio, Shaler is thrilled to be working with Health Story Collaborative on a monthly audio series called “Soul Chronicles for the Chronically Ill.” Shaler lives with Chronic Inflammatory Response Syndrome.
Rene Morales is a dynamic leader with over thirty years of administrative experience and serves as the Executive Assistant to Deputy Director of Washington State’s Department of Veterans Affairs. A native of San Antonio, Texas, Rene served over twenty-six years on active duty with the U.S. Coast Guard and retired as a Chief Warrant Officer. In February of 2018, Rene was diagnosed with Trigeminal Neuralgia, a chronic pain condition that affects the Trigeminal Nerve, which carries sensations from your face to your brain.
Kelly Keena is an educator who studies the relationship between ecological and human wellbeing and an adult living with cystic fibrosis. She lives in Denver with her husband, daughter, dogs, and chickens.
Meet Our Partners
Health Story Collaborative
The mission of Health Story Collaborative is to keep the patient voice alive in healthcare and to harness the healing power of stories. By collecting, honoring and sharing stories of illness and healing, we strive to make the process of navigating illness less isolating and to empower individuals and families facing health challenges. Our belief, supported by research, is that storytelling is healing for both story sharers and listeners. Stories have the power to transform individuals as well as the healthcare system.
Unfixed is a media production company that focuses on stories of humans living with chronic, incurable conditions. People love fixer-upper stories, miracle cures and answers but many wake up each day without any of these.