By Donna Gregory Burch
Whether we like it or not, the holidays are here! As the big day approaches, so do all of the “shoulds” associated with the season. We should deck out our house with decorations in every room. We should make everything from scratch for our holiday meal. We should go to all of our friends’ holiday parties. We should go to the mall and spend hours seeking out the perfect gifts. We should. We should. We should.
But as author Lene Andersen reminds us in her new book, “Chronic Christmas: Surviving the Holidays with a Chronic Illness,” what we really need to do is to stop “shoulding” ourselves and get real about our lives and limitations. Living with chronic illness changes pretty much everything, including how we celebrate the holidays.
As someone who struggles with the “shoulds,” I was thrilled to run across Andersen’s book, which she describes as “an Advent calendar full of self-care tips to help people with chronic illness savor the holiday season as never before.”
I thought we could all use a little self-care this holiday season, so I asked Andersen if she’d be willing to talk about her new book and share some of her best tips for surviving the holidays with chronic illness. I hope you enjoy our interview.
I read that you have rheumatoid arthritis (RA). Can you tell us a bit about your journey of chronic illness?
The first symptoms appeared when I was 4 years old. I grew up in a time when there were no treatments for this disease, and by the time I was 16, I’d had both hips replaced and was using a power wheelchair. I moved from Denmark to Canada and set about having a pretty normal life, going to university, worked, spent time with my friends.
And then in 2004 a big flare of my RA changed my life. I was so sick that I thought of suicide, but finally started a biologic medication, and for the first time in my life, a drug worked. I wanted to honour this gift of a second chance at life. It is important to me to use my decades of experience living with chronic illness and chronic pain to help others in the same situation find a way to live a good life. I combined that with pursuing my dream of being a writer and started my blog, The Seated View, on which I write about chronic illness, pain, disability and share my passion for photography. I’ve since written three books about chronic illness and chronic pain, and am the community leader on HealthCentral.com’s rheumatoid arthritis site.
What inspired you to write a book about how to navigate the
holidays with chronic illness?
I was hearing a lot of people in the chronic illness community talk about how stressful they found the holidays. Christmas is my favourite day of the year, and I wanted to help others enjoy it as much as I do.
What are some of the most common challenges faced by the chronically ill at the holidays?
The pressure to put on a perfect holiday for the people you love can be completely overwhelming. Having a chronic illness is already a full-time job on top of all the other things in your life, and there often isn’t room for anything else. And then the holidays arrive, with the expectations of decorations, a spectacular dinner, a pile of presents and all you want to do is nap.
Your book follows the format of an Advent calendar and includes a chapter for each day leading up to Christmas. Why did you decide on that format?
Advent calendars were an important part of my childhood. We’d light an Advent candle every morning, burning down about a centimetre per day. Sometimes, we’d get an Advent calendar with small presents every day leading up to Christmas. The Advent calendar format breaks the overwhelming into smaller, bite-sized pieces, making it easier to do and enjoy. And it’s a great way of building anticipation.
For each day, there’s a section in your book to be read by the person with chronic illness and a separate section for family members/friends of those with chronic illness. Why did you feel it was important to include family/friends?
The people who love us want to help, but may not know how, and we who live with chronic illness often find it difficult to ask for help. I wanted to bridge that gap between the person with chronic illness and their loved ones. The family member/friend sections give a bit of a gentle education about the reality of living with chronic illness, as well as easy and practical ways to help. Hopefully it’ll get the conversation started. I also hope that people will read each other’s sections to build more understanding between them, as well as enjoy the whole book!
What are your best tips/advice for navigating the holidays with chronic illness?
Get real. About where you want to spend your time and energy, about your limitations, about ignoring the pressure to be perfect. Lasting memories are created by the love and laughter between you and your family and friends and, quite frankly, the moments where things go wonky and you find a way to celebrate anyway. Focus on what is quintessentially the holidays to you and make some hard choices about what you won’t do. It will free you up to be where you want to be and might even help you feel well enough to be part of the big celebration!
Where can people connect with you if they want to learn more?
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.