Advocating for chronic illness is a year-round job, one we do with passion and dedication. But advocacy can get more challenging during the holidays. It’s a busy and sometimes emotional time of year and there’s only so much energy to go around.
My new book Chronic Christmas: Surviving the Holidays with a Chronic Illness is an Advent calendar of tips to help you savor the season. When writing it, I wanted to not just deal with things you can do yourself to enjoy the holidays, but something more, as well.
So much of living well with chronic illness has to do with the reactions and support we get from others. That’s why I included a section in each chapter for friends and family who want to help, but may not be quite sure how to do that. In these, I shared information about the reality of living with chronic illness to explain why certain types of help may be a better choice than others. It is my hope that reading Chronic Christmas will help your loved ones have a better understanding of life with chronic illness and in so doing, be better able to contribute to your quality of life.
Navigating this season with a chronic illness and the desire to create change is a physical and emotional challenge. Other than thrusting my book at all and sundry (joking… maybe), what can you do to advocate for yourself and others this holiday season? Here are a few suggestions.
Dealing with difficult people
We all know them. That person who makes a beeline for us at social events, ready to share esoteric techniques bound to cure our chronic illness. This type of diet, that type of home remedy, and their hairdresser saw something on the Internet about leeches. You could roll your eyes and walk away, but you could also seize the moment and give solid information about your illness and its appropriate treatment. Don’t wait to get cornered — this type of situation can feel emotionally fraught when you’re dressed for a party and there to have fun. Preparing what to say before going out helps you click into health activist mode when needed.
A baking brigade
Have you ever heard of a cookie exchange? This can be a wonderful time and energy saver. You collect a group of people, each of whom makes half a dozen or a dozen cookies. Then you get together, share the treats, and everyone goes home with a variety. Being part of a cookie exchange is also a great way to share information about the impact of trigger foods. Find out which kinds of sensitivities and allergies are present in the participants and their families. When the instructions go out, make sure you include information about the consequences of eating such foods, as well as ways for food be safe.
Living with a chronic illness can be a very isolating experience. Pain and fatigue makes you turn inward and block out the world around you. One of the suggestions in my book is to deliberately engage with the world around you. Turn off the music, put the phone in your pocket, and look up. And then start talking to the people you meet. The barista at the coffee shop, the homeless guy on the corner, the person next to you on the train. Smalltalk can lead to deeper conversations where it may be natural to talk about chronic illness.
Chronic illness advocacy can take a variety of forms, from big to small. You may not have the energy or to testify to Congress, but there are opportunities in your everyday life to educate and advocate. Often, those small moments have ripple effects. You talk to one person, they talk to their friends, and the message moves.
For the days when you are feeling exhausted and wish you could do more, remember this one thing: when you create change in your life, you change the world.
Lene’s new book is Chronic Christmas: Surviving the Holidays with a Chronic Illness. She’s also the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, 7 Facets: A Meditation on Pain, and the award-winning blog The Seated View.