For many people with chronic illnesses, the holidays can be a lonely and exhausting time. Health limitations may keep them from joining celebrations, and participating in the festivities can quickly tire them.
The Washington Post asked people with chronic conditions for advice for family members, friends and colleagues to help make the holidays an enjoyable experience for everyone.
“It all begins with listening and validating,” said Ben HsuBorger, U.S. advocacy director of MEAction, a nonprofit advocating for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Here are 10 more recommendations for a fun and inclusive holiday season.
1
Invite people with chronic illnesses to holiday parties, and be okay with hearing ‘no’
With certain chronic illnesses, people can become rundown quickly, and their fatigue can last for a significant period of time. Particularly during the holidays with multiple events to attend, they must use their energy strategically, so they may need to decline your holiday party.
Invite them anyway.
“For so many of us, we’ve constantly had to say no and then we feel like, ‘Oh, people are getting annoyed by that. They probably won’t call anymore,’ ” said Charlotte Florez, 36, of Raleigh, N.C., who has postural orthostatic tachycardia syndrome (POTS) and vasovagal syncope, both of which can cause a fast heart rate and dizziness, lightheadedness and fainting upon standing. “Continuing to invite them and giving them the opportunity and letting them know that you want them there is really important to them.”
2
Consider coronavirus testing and masking
Hosts and other guests could consider taking a coronavirus test, masking, or holding the event in a spacious, well-ventilated area, particularly when inviting those who are immunocompromised.
“Chronically ill people are not a burden; they’re a reminder,” said HsuBorger, 41, of Madison, Wis., who has ME/CFS, an infection-associate disease that causes severe fatigue. “Maybe these conversations can be touch points for thinking about the health of our entire community.”
3
Include people with chronic illnesses, but give them light tasks
Ask whether guests with chronic illnesses would like to contribute. If they want to pitch in, suggest bringing something store-bought, such as napkins, plasticware, or a premade dessert.
Shannon Koplitz, a 44-year-old from Clearwater, Fla., who has POTS, said she enjoys participating in festivities, but because of her limitations, her family gives her a simple side dish she can prepare in advance — and one that is not crucial to the meal in case she becomes too fatigued to finish it.
“My family is very understanding, and they know to give me only one assignment,” she said.
4
Create a space where guests can rest
Many people with chronic illnesses need time to rest and recover. Provide a comfortable, quiet space where they can take a moment to relax — a bed, a couch, or a recliner in a separate room. If you have a heated blanket, throw it over the chair for them to use since some guests may have conditions that cause achy joints, muscle pain, or problems regulating body temperature.
Let them know the space is there for them.
“I just want my family and friends to be mindful and give me some grace — don’t take it personally if I have to step away and rest,” said Shonda Berry, 42, of Chicago, who has an autoimmune condition called ulcerative colitis, which affects the gastrointestinal system.
5
If possible, designate a restroom for those with GI issues
Some chronic conditions cause GI problems, and it can be embarrassing, stressful and nearly impossible for people to wait for a restroom. If possible, have a separate bathroom — and let them know they can use it.
Berry said because of her condition, she must avoid gatherings where there is only one restroom. “If I can have a designated bathroom, that is most helpful,” she said.
6
Plan an inclusive menu
Ask ahead of time whether your guests with chronic illnesses have any new food allergies or intolerances. Have at least one dish they can eat, and let them know it is for them. Some guests may even prefer to bring their own food.
Also, have a festive, nonalcoholic beverage such as sparkling cider or mocktails for those who cannot drink alcohol because it may exacerbate their symptoms or interfere with certain medications.
7
Have adaptations for physical activities
Some holiday festivities are more physical. Be mindful that some guests may need special accommodations. For instance, when preparing a holiday feast or baking festive cookies, have a spot where they can sit to chop vegetables or roll cookie dough.
If you plan to go caroling, have one family member or friend bring a vehicle so people with chronic illnesses can sit down and rest, or be taken back home if they become too fatigued to continue.
Still, be prepared that you may go to the trouble to accommodate someone “and then they’re too sick to do it,” said Jaime Seltzer, director of scientific and medical outreach at MEAction who also has ME/CFS.
“That’s something, unfortunately, they have no control over,” she said.
8
Have considerate conversations
Some people with chronic illnesses may want to discuss it. Others may not. It is nice to give them the opportunity to tell you how they are doing, but leave space to chat about other things.
“Remember that we’re so much more than our illnesses,” said Florez, community engagement coordinator for the nonprofit group Dysautonomia International.
9
Offer to help with holiday preparations
Whether hosting or attending an event, do not force assistance on people with chronic illnesses, but certainly ask — at least twice — whether you can help, said Seltzer, 41, of San Jose.
And be specific with your offer. “If you’re asking if there’s anything you can do, that offloads the decision-making process — which is also a task — to the sick person,” Seltzer added.
Instead, ask to carry shopping bags, wrap gifts, set up for the festivities or clean up afterward.
10
If guests with chronic illnesses cannot be a part of the festivities, follow up
Despite their best efforts, family members or friends with chronic illnesses may not be able to attend the celebration. That does not mean they did not want to. Following up with them — calling them on the phone, paying them a visit, bringing them some holiday cookies — is a meaningful gesture.
“It’s very easy to be lonely and go into a dark place during the holidays,” said Sam Norpel, 48, of Blue Bell, Pa., who has long covid. “Find little ways to connect and reach out to them so that they don’t feel so alone.”