The first holiday season after getting diagnosed with POTs (postural orthostatic tachycardia syndrome), a circulatory disorder that can make you feel faint and dizzy, was the worst, says Marie H., a 32-year-old mother of two. “I felt like my life had been turned upside down by my disease. There were days when I could barely get out of bed. So I just wanted the holidays to be perfect,” she says. And they were perfect! Well, for everyone else at least. Instead of accepting the limitations that came with her illness, Marie says she pushed herself way past the point of exhaustion trying to get everything done exactly the way she thought it should be done. She cooked fancy meals, entertained guests at parties, bought tons of presents for her kids and even spent two days straight making jars of cookie dough mix to give to the neighbors, complete with Pinterest-worthy tags and bows. “It turns out that just because I can do something doesn’t mean I should,” she says. “I ended up in urgent care just a few days before Christmas, so dizzy and weak my husband had to practically carry men in. And for what? So my kids could have ‘perfect’ memories? So I could post pictures on Instagram that my friends would forget as soon as they liked them?” Instead of the Insta-perfect Christmas she’d worked so hard for, she spent the day — and the week following it — in bed, in her room, fighting off waves of nausea, exhaustion, and depression.
Coping with Chronic Illness During the Holidays
Marie certainly isn’t the only person with a chronic illness to deal with a major flare up thanks to holiday stress. This is why having a happy holiday season starts with setting appropriate expectations and boundaries, says Judith Belmont, MS, a licensed professional counselor and author. Being clear about what you need, what you can realistically expect of yourself and others, and what you can and cannot do this year will help you avoid a lot of stress and pain now and in the days to come, she says. To help you have a beautiful, stress-free holiday while not giving up everything fun about the season, we talked to experts and people with chronic illnesses about what helped them the most. Here are their best tips, one for every day of the month of December:
1. Make cooking assignments
Forget the old adage about too many chefs in the kitchen being a problem. When it comes to big holiday meals, the more hands, the better. “I volunteered to cook Christmas dinner for my whole extended family which at first seemed crazy as this kind of thing can cause my lupus to flare up. But I just assigned each person a dish and told them they can use my kitchen if they are coming from out of town,” says Janelle W. “It’s going to be awesome because this way I get to spend even more time with my mom and siblings.” (These kitchen hacks for arthritis can make cooking easier if you have chronic pain.)
2. Set a hard ending time
Holiday invitations are often open-ended, allowing celebrations to last well into the night — but they don’t have to. And if you are dealing with a chronic illness, they shouldn’t. “My fatigue and pain are my biggest problems with parties,” Janelle says. “I’ve learned that my limit is two hours max before I crash hard. So I just include an ending time along with the start time on the invites and my husband helps make sure everyone sticks to it.”
3. Meditate on what you’re thankful for
When you’re dealing with a chronic illness, it can be easy to focus on how it’s hurting your life but taking a moment to focus on all the good things you have going on can make a big difference in how you feel. Taking a few minutes out of your day to meditate can tamp down your body’s stress response.
4. Plan a recovery day into your schedule
“This year we are flying cross country to visit family for Christmas which, thanks to my ulcerative colitis, I know will take a lot out of me and I’m going to be a hot mess by the time I get there,” says Katherine L. Her solution? Plan rest days into her busy holiday itinerary. “I sent my family our schedule and it includes a full day for napping and recovery the day after we arrive. We are also coming home two days early so I can use those extra vacation days to rest before going back to work.”
5. Drive two cars to holiday parties
“In addition to my autoimmune disease, I’m also an introvert, so parties are tough for me for a lot of reasons,” Katherine says. “I definitely don’t want to stay as long as everyone else.” After a disastrous meltdown during a get-together with friends last year, she says she’s already told her boyfriend they’ll be driving separately to holiday events so she can leave when she’s ready without making him miss out on festivities.
6. Turn your bedroom into an escape room
We don’t mean the kind where you have to solve puzzles before you get eaten by zombies. Rather, it’s important to make sure you have a place you can escape to and rest, especially if you’re having guests stay at your home. “I stock my bedroom with an electric blanket, a basket of snacks and drinks, some new magazines or books, and my tablet,” Katherine says. “If I need a break, I know I have a safe space to relax.”
7. Keep to your regular sleep schedule
Getting a good night’s sleep should be a top priority for everyone but for people who already struggle with their health due to a chronic illness, getting enough sleep is non-negotiable, says registered dietitian Mitzi Dulan, RD. “You will feel healthier and more refreshed after a night of good sleep, so don’t forget to prioritize sleep this holiday season,” she says. “Remember, you don’t have to attend every function.” Getting enough sleep can be admittedly hard if you’re dealing with painsomnia, so check out this advice to help cope with painsomnia.
8. Try this all-natural cough remedy
Getting a seasonal cold or flu — sadly as common to the holidays as tinsel and lights — takes an extra toll on people who may already have compromised immune systems. Plus, treating them can be extra difficult if you’re worried about OTC meds interacting with your regular meds. One natural remedy you can try is adding a tablespoon of honey to a warm drink, Dulan says. One study found that honey was even more effective at quieting a cough than over-the-counter cough syrup. These other tips are essential to survive cold and flu season with inflammatory arthritis.
9. Do what you love to do
“I know this is going to sound weird, but for me personally I hate making everything about my rheumatoid arthritis, so I do my best to keep all my favorite Christmas traditions. If it gets to be too much then I’ll stop,” says Megan B. She’s planning on doing the annual Santa 5K run with her family as usual (although she says she’s walking, not jogging) and going up in the mountains to pick out a tree, for example. “Focusing on what I can do, versus what I can’t, helps me feel like myself and not get depressed,” she adds. “Plus, who knows how much longer I’ll be able to do these things? So I’m going to do it as long as I can.”
10. Practice saying no (and meaning it)
One of the biggest challenges people with chronic illnesses face during the holidays is saying no to seasonal treats and activities — and staying firm in their answer — even when you know it may hurt some feelings, says Samantha Markovitz, a board-certified health and wellness coach. “Be gentle and kind but there’s no need to apologize for prioritizing your well-being in a social setting,” she says. Check out this advice for saying no to social plans (without feeling totally lame).
11. Prep as much as you can
Cooking and baking are integral to the holidays for many people and being able to make your family’s traditional favorites is a great way to celebrate. But while others may be able to power through one long day baking 30 different kinds of cookies or spending all day in the kitchen making a multi-course feast, that’s simply not an option for many people with chronic illnesses. “I start making Christmas Eve dinner in November, I’m not even kidding,” says Allison T., who has several autoimmune disorders. “On my good days I’ll make the pie, soup, mashed potatoes, or rolls and put them in the freezer. You’d be amazed at how many things you can freeze!”
12. Get good at power naps
“Sometimes all I need is a 20-minute power nap to be able to feel better,” Allison says. “My favorite time is to sneak away right after the meal. I can take my medications and lie down while everyone is still chatting but before they leave.”
13. Invest in an Instant Pot
Why cook yourself when there are so many cool gadgets now that will do it for you? “I’d die without my Instant Pot [pressure cooker],” Allison says. She uses it to quickly cook everything from roasts to soups to vegetables. There are also a ton of online recipes for holiday favorites that use slow cookers, like mashed potatoes and cranberry sauce. (P.S. Using a disposable liner will make clean up a snap.)
14. Toast the New Year with sparkling cider
Having a chronic illness means being extra careful with what you put in your body and that’s especially true when it comes to alcohol. Eggnog, hot toddies, champagne, and other holiday favorites can take a toll on your health, especially if you’re on medication that shouldn’t be taken with alcohol. Listen to your doctor’s advice, know your limits, and avoid drinking altogether if it worsens your symptoms.
15. Carry a bottle of hand sanitizer
Unless you hermetically seal yourself in your house for the next four months, you can’t avoid germs completely. But you can help save yourself the added agony of a cold or flu on top of your chronic illness by keeping your hands as clean as possible. Wash your hands or use sanitizer throughout the day, especially before eating ; avoid touching your eyes, nose, and mouth; and steer clear of people who appear to have a cold, flu, or other illness. And do yourself a favor and get a flu shot if you haven’t already. (Here’s what to know about flu shots when you have inflammatory arthritis.)
16. Give a gift to charity
Whether it’s donating a sum of money to a local charity, donating a new toy to a school drive, or just dropping a few coins in the Salvation Army bucket, giving to others is a simple way to help you feel better inside and out this season, says Elaine Martyn, a family philanthropy expert at Fidelity Charitable. In a study done by the company, 48 percent of people who donated reported feeling happier overall. The researchers also found that giving provided health benefits, lowering stress and reducing physical pain.
17. Two words: disposable everything
Paper goods and plasticware were invented for a reason — to make serving and cleaning up easier. So don’t let tradition or your pride prevent you from taking advantage of these awesome products, says Steven T., who has multiple sclerosis. Think beyond paper plates and plastic cups and stock up on disposable napkins, silverware, bowls, serving utensils, and tin foil cooking pans.
18. Come up with a code word
“Whenever I tell my wife I need to check on ‘Millie,’ our dog, she knows that I need a break and will either take me home, if we’re out, or send our guests home,” Steve says. If you’re hesitant to talk about your illness for whatever reason, having a pre-agreed upon “code” word or phrase can give you an easy out without having to answer uncomfortable questions.
19. Get your meds pre-authorized
If you’re travelling and you rely on daily medications, getting them filled can be a huge pain or even prohibit you from going long distances. Avoid this hassle by calling your insurance company ahead of time and getting pre-authorized for a longer prescription, Steve says. Many prescriptions are limited to 30 days but with your doctor’s permission, sometimes it’s possible to get them lengthened to 90 days, he says. If they won’t do that, they may at least be able to authorize you to pick up your prescriptions a little early so it doesn’t interfere with travel plans.
20. Write thank you cards for your doctor and nurses
A chronic illness often means chronic visits to hospitals and doctor offices, and sometimes you really bond with the people taking care of you. Have an amazing doctor or nurse? ‘Tis the season to write them a letter and let them know how much they mean to you. “Taking time to refocus on people you are thankful for brings a fresh perspective and helps you remember the true meaning of the holidays,” Markovitz says.
21. Create flexibility in your work schedule
“Last year the stress from the holidays caused me to have a full-blown health crisis; I spent Christmas Eve in the hospital,” says Eugenia S. “I’m terrified of that happening again.” Unfortunately taking a large chunk of time off isn’t possible with her work, so she told her boss her fears and he was able to arrange a more flexible schedule through December and January. “I didn’t want to bring it up, but he was more than happy to help. I just had to ask,” she adds.
22. Check out local disability services
If you’re disabled from your chronic illness many communities offer extra help around the holidays, Eugenia says. There may be places — think churches, schools, and community centers — that can bring you a holiday meal if you can’t get out, take you Christmas shopping, arrange for group activities like caroling, or other holiday extras.
23. Make a holiday playlist of all your favorite tunes
Music has been found to reduce pain, alleviate anxiety, increase immune functioning, and increase positive emotions — all things that people who live with chronic illness can really benefit from, says Azizi Marshall, founder and CEO of the Center for Creative Arts Therapy, Artful Wellness & Psychology Arts. Whether you enjoy singing the carols yourself or listening to the pros belt them out (or both!), music can be a great mood lifter during the holiday season.
24. Order groceries and presents online
Online shopping and delivery services are a godsend during the holidays, says Annie J. “My chronic fatigue syndrome makes normal grocery shopping feel like climbing Mt. Everest. Some days I’d rather just starve then try and make it through a store,” she says. But with kids expecting holiday cookies and presents under the tree, she had to figure out something, she says. “I joke that ‘Santa’ is spelled ‘Amazon Prime’ at our house.” Bonus: Many places will wrap them before shipping, for an extra fee.
25. Buy special scissors and tape
If you love wrapping presents but arthritis makes all those small movements impossibly painful, try investing in special tools designed for people with limited range of motion or weakness in their hands, says Tom Ryan, a physical therapist who works with arthritis patients in private practice in Denver, Colorado. “Look for scissors that are spring loaded, with large rubberized handles, and sharp blades. They require less pressure to use,” he says. Similarly, you can buy larger tape rolls and dispensers or use a rolling tape dispenser that automatically cuts off the tape.
26. Or stick to gift bags
“My Christmases got way simpler and less painful once I realized I could just buy a large pack of gift bags and skip wrapping presents altogether,” says Angela M. “The grandkids still get the fun of having something to open but I don’t have to fight my arthritis to wrap things.”
27. Don’t be afraid to make new traditions
Is “Go big or go home” your family motto at the holidays? Too many people think that holiday traditions have to be things like a 10-course feast, a mountain of presents, and black-tie parties every weekend. Forcing yourself to stick to these types of extravagant traditions can be super stressful and cause a flare-up of your illness, says Mary Fristad, PhD, professor of psychiatry, psychology and nutrition at The Ohio State University Wexner Medical Center. Don’t be afraid to create new traditions — spending Christmas in pajamas all day, anyone? — that are both fun and functional for you, she says.
28. Pay the neighbor kid to shovel your porch
If you live in an area that gets a lot of snow over the holidays, having a clear driveway, stairs, and sidewalk can make all the difference between a happy holiday and one spent in a hospital, says Richard Honaker, MD, of Your Doctors Online. “People with many types of chronic illnesses, including diabetes or any type of heart disease, need to be very careful with shoveling snow,” he explains. “The isometric exertion puts a strain on the heart as does the cold temperature.” Consider hiring a snow removal service or asking a neighbor to help you out.
29. Call ahead to restaurants and venues
Restaurants, stores, theaters, and other public places can be extra crowded this time of year but that doesn’t mean you need to skip all your favorite holiday events — you just need to do a little extra prep work, says Ellen M. “My multiple sclerosis means that I need to have a place to sit at all times so before going out, I just give them a quick call and make sure they have public seating in their waiting rooms or have a place for my wheelchair if I need to bring it,” she says. “That way there are no bad surprises, or at least fewer of them.” Whether your illness needs a specific type of food preparation, special lighting, or close parking, make a quick call to make sure the venue can accommodate it.
30. Do some mall walking
“Forcing myself to do some light recreational exercise, like walking, has been instrumental in helping me manage my rheumatoid arthritis, as it lubricates my joints and keeps me from getting stiff,” says Martin F. The holidays give you the perfect opportunity to take a walk to see the lights in your neighborhood oe go caroling. If the weather is too cold, go do a little window shopping in the mall and cross some stuff of your holiday To-Do list at the same time.
31. Forgive loved ones for not being there when you need them
Having a chronic illness can show you who your true friends are. While there will be some who will be there for you 100 percent, it’s common to be disappointed sometimes by loved ones. Perhaps they dismissed your illness or said something thoughtless. Or maybe they just weren’t there when you needed them. Regardless of the offense, the holiday season is the perfect time to practice forgiveness, Belmont says. “Try to see your loved ones as human beings with faults rather than seeing them critically and judgmentally,” she says. This can be the holiday season you let go of grudges and focus on loving, she adds.