Chronic Christmas: Surviving the Holidays with a Chronic Illness

Chronic Christmas: Surviving the Holidays with a Chronic Illness

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.

chronic-christmasBut 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? 

You can find me on my blog TheSeatedView.com, and on social media on TwitterFacebook, and Instagram.

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.

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Authored by: Donna Gregory Burch

There are 3 comments for this article
  1. Jean Price at 9:36 pm

    A season of dubious firsts for me! This Thanksgiving was the first one for me not to bake anything, anything AT ALL!! And, this Christmas will be a first not to be able to be with the smallest grandchildren…because I’m not travel worthy! And they want to spend it at home…which I heartily support, even though I can’t be there. (At five and eight years…Santa coming to your house and then playing all day with EVERYTHING he brought you is so much better than having it early or having to leave choice new presents at home until you return!). So, that’s great, and I give them my blessing!

    Really, it’s time for the torch to finish passing…I’ve done less and less through the years and our two daughter are more than capable of taking over the traditions and adding their own flares. They both are excellent cooks and we are welcomed to their homes whenever we can make the trip. Occasionally we’ll all get together at one house only about three hours from us. And one year, we all traveled and met up and stayed together at the beach, and found sea shells to make tree ornaments and sang Silent Night to the music of the waves! So many good memories, so many changes from one Christmas to the next…for everyone really! Yet, it’s still hard for that torch to pass just because of pain and a little age…to feel it wrenched from your grip before you’re ready…or willing!! And that’s what it feels like somedays, if I’m honest. But if I’m also honest, I don’t feel well enough this year to do anything…so knowing I don’t HAVE to, that I’m NOT EXOECTED to IS a blessing FOR SURE. SO, I’ll be with the main person in my life, and he is oddly content to stay home and sit with me, watching TV, reading, talking, maybe having me oversee his traditional batch of Chex mix so it isn’t too spicy for me to enjoy, too! And this Christmas, that will be enough. I can think of a long ago Christmas, with an enhausted young woman, heavy with child… and a concerned husband having trouble finding shelter for the night…the night their child, a little boy, would be born. And I’ll realize how much better my accommodations are than His were that night, or his parents too! Right on the heels of this thought will come the overwhelming awe, the knowledge of how loved we all are by God! Who came to be with us and live among us as Love on that first Christmas Day! And I will wrap myself up in His goodness and light from above, pain and all…and say a prayer of thanks for this great gift, and for His love and grace that brings such joy and peace…even to those who struggle with pain. My husband and I may touch together glasses of egg nog…and wish each other a Merry Christmas…and exchange a kiss. And we may reminisce of Christmases past when the girls were young and we had so much to do putting toys together. And it will be a special Christmas, because you can’t go wrong with love…giving it, receiving it, basking in it, feeling it from special friends and family who aren’t there with us, and accepting it from the One Who is Love! So, Merry Christmas everyone, wishing you your personal best days….and comfort, heart peace, and joy! Bless you all!

  2. Kathleen at 10:35 am

    Fortunately I am now a senior and I dont need ti plan my holiday load.
    My brother and sister are gone, and parents ..very elderly, died too.
    Friends basically just dont get it. The few I may call on off-times(rarely)..tell me all about their issues, as they grow older. Never ask me. They are married..I am not. They maybe fear what single people do. Or dont think about much. I wonder if some remember my career was stopped dead at 39. Good to great career.
    I dont know but 2 newer friends who ask me anything. I dont need to make it a focus anymore. I greatfully tell one kind friend- I know you are getting your rare few days off..Just try to get some real relaxation in..or, -to the other, near-by, I might call, she is my only in person pain friend.. if I know in advance if her overgrown son is not likely to barge in. Even if she tells him she is not making any meals around Christmas, he is an addict, he pushes in and makes her very sad. I do talk with her about her burdens- all of them. We tell truths to each other.
    Disability STILL is behind closed doors. No one really has time to talk..except another isolated, non – treated pain patient.
    I am one of many that dont have to train anyone about my pain and how insanely limiting it is. I dont think I could read verses and ‘let them read verses.’
    I actually doubt that I could ever take over like that. Since meetings are so beyond rare. I either show up..and try to wing it, or leave early.. explaining briefly I am washed out, the pain is “starting” to accelerate. If anyone wants to know why.”Gotta go” and off I go.
    I drive myself home, far from the friends I used to be closer with. Now living in a more exclusive (excluding) area. I feel a chill. These meetings are probably over. As they age they find they are withdrawing.
    Funny how I always dreamed of old friends gathering. And purpisely living close.
    Its tougher to gather a new group closer to home. Most need help or want to stay in their home.
    Si phones, maybe.. and internet daily are h ow the single, with limited family..manage the stress of the holidays.
    If I saw far away family on holidays..I would only concern mysrlf with being cleaned up and dressed neatly..maybe. and absolutely ask the hostess what I could bring.(dreading bit would ask anyway)

  3. Donna Rubinetti at 5:35 am

    I can really relate to this post!! I am ALWAYS saying “I should do this an that.” It hurts me when I do this to myself. But I am truly grieving for the way I was before my illness. Now I am almost incapacitated. I want to participate in this holiday, even if on a small level. I have been invited to our yearly joyous xmas dinner (an all day affair), at my sister’s house. But I have pain when I stand and when I sit. High level pain. So I don’t know what to do. I’m plagued with “shoulds.” Can anyone else relate to this? It makes me cry all the time because I am no longer the “Donna” that I was.