By Jennifer Crystal
Many people with Lyme disease don’t have the physical capacity to celebrate the holidays. But that doesn’t mean you can’t enjoy them! Here are some tips to work around your illness during the holidays.
When my college friends and I were in our early twenties, we used to gather every New Year’s Eve in a city where one of us was living. We partied, cheered at midnight, and continued celebrating into the wee hours of the morning.
Each year, the festivities got a little harder for me, and it wasn’t because I was getting older. It was because tick-borne diseases had been infecting me since I was 19, quietly spreading through my body and brain until, when I was 25, they fully commandeered me. Finally diagnosed with Lyme and some of its co-infections, and on intense treatment, I became bedridden. Traveling for New Year’s—let alone staying up until midnight—was out of the question.
Since I couldn’t celebrate the holiday the way I traditionally had, I came to feel that celebrating at all was also out of the question. I was wrong.
After their festivities, my friends began a tradition of traveling on New Year’s Day to my parents’ house in Connecticut, where I was convalescing. We’d eat lunch together, and they’d sit with me on the couch. Sometimes I fell asleep while they were talking, surrounded by the warmth of their voices. Sometimes I disappeared upstairs to rest in my bed. When I came back, they were still there chatting and laughing, waiting for me. It was a demonstration of unconditional love.
It was also a lesson in unconventional holiday celebrations. Many people with Lyme and patients with other debilitating illnesses don’t have the physical capacity to mark holidays the way they did when they were well. They may no longer be able to cook their favorite meal, travel to a family gathering, or even sit up through dinner. But that doesn’t mean they can’t celebrate at all. It just means they have to reframe the festivities to work around their illness.
What might this look like in practice? Here are some suggestions:
- Change the celebration to a time that works for you. Even after I wrestled my health into remission, I still couldn’t stay up until midnight. One year my graduate school friends threw a party on New Year’s Day instead of on New Year’s Eve. We had brunch and then I took a nap. My family now does Thanksgiving, Hanukkah and Christmas dinners around 4 p.m., after I get up from my nap. I miss hors d’oeuvres, but I’m still able to enjoy the meal and be well-rested to boot. My college friends still get together around the holidays for what we call “Christmakkah.” They drive to wherever I am, and though it’s not technically on Christmas, Hanukkah or New Year’s, the point is that we get together and enjoy each other’s company, in a way that works for all of us.
- Bring the celebration to you. This doesn’t mean you have to do all the work. In fact, you may not be able to do any of it. But would friends or family members be willing to gather at your home, rather than you having to travel, and bring food with them or cook it at your house? Perhaps they can help prepare your favorite meal; you can direct them from the table or couch, or sit down to chop one apple while they stand to do the rest. I know how hard it is to ask for help, but friends really do want to pitch in and feel like they’re doing something tangible for you. They may be more open to changing tradition than you’d expect. Sometimes all you need to do is ask.
- Realize it doesn’t have to be all or nothing. You might not be able to string lights on a Christmas tree, but that doesn’t mean you have to stay upstairs in bed while your family decorates. Can you hang one ornament? Or lie on the couch watching your family trim the tree, so you can still feel like you’re part of the action? You might not be able to attend a full party, but could you have a friend drive you over early to visit with the host for half an hour before things get too busy and noisy? Can you attend the party but ask the host if you can slip upstairs to lie down if you feel the need?
- Remember it’s okay to say no. Holidays are stressful for everyone, a time when both the healthy and the infirmed tend to push their limits to travel, attend gatherings, or rush around shopping and going to parties. Ask yourself, is this push really necessary? Is it worth it to jeopardize my health? You must put your health first, even at the holidays, even if that means missing out or being disappointed.
- Take time to celebrate yourself. One Christmas I was too sick to go next door to the neighbors for dinner. I had a pity party for a few minutes. Then I ordered my favorite Chinese food, put on cozy holiday pajamas, and journaled about the progress I had made during that year. Even if you can’t go anywhere or do anything this holiday season, you can still turn yourself and your place of convalescence into a comfortable spot for a personal celebration. Take a bath, read a light magazine, watch a favorite holiday movie, or do whatever it is that makes you feel nurtured.
- Remember the big picture. Celebrating “Christmakkah” helped me realize that ringing in the New Year with my friends was about being with them, not about being awake at midnight on December 31st. You might not be able to do all the activities you used to do, but what’s the most important part of those celebrations anyway? Is it being with people you love? Singing carols? Eating a specific meal? Find a way to enjoy those parts on an alternate schedule, rather than bemoaning the fact that you can’t celebrate the full holiday as you are “supposed” to.
I wish you all a happy and healthy holiday season!
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at firstname.lastname@example.org