Jodi Taub, a New York-based therapist, specializes in treating patients who have rare and chronic diseases. Taub, who lives with a primary immunodeficiency herself, speaks on the topic for patient advocacy organizations.
The holidays overflow with meaning for many of us. It’s a time to savor long-established traditions and make plans with friends and family. However, for those living with rare, chronic conditions, the holidays always come with an added layer of stress.
Like everyone else, we wonder how we will get it all done. And we bear the extra burden that our health issues could cause us to cancel plans, disappoint our favorite people and miss out on some of the fun that comes only once a year.
Colds, the flu and other illnesses are more common in winter because we gather more indoors in colder climates. That’s always been the case. But COVID-19, with us for a third winter season, also hangs over plans to get together at holiday parties and other events. Due to lifted precautions and public pandemic exhaustion, it can feel particularly challenging to ask others to accommodate an outdoor event or take safety precautions, like wearing face masks. This can feel like further loss for those of us who do not have a choice, but continue to need to be careful. Missed events of holidays past can stir up old wounds.
Sometimes it can feel easier to say no to the holidays and avoid all of the stress. But just because it’s complicated does not mean that we should give up. It is important to maintain holiday rituals, especially those that connect us to family and friends. These memories provide lasting joy, and bring meaning to our lives.
Finding an emotionally and physically safe way to participate is key. Here are steps to take:
1. Set expectations.
Communicate your needs to others and give them a chance to step up. What you think will be too much of an imposition may not feel that way to others. Remember that able-bodied individuals may have their own self-imposed restrictions or requests based upon personal preferences. For instance, someone might ask about vegetarian options at a dinner or party. Another might want to schedule a gathering earlier in the day because they have young children. Knowing that other people ask for accommodations can help you feel comfortable asking for your own.
Before the holiday scramble, take some time to determine your own limits and needs. It is much easier to communicate to others when you feel grounded about your own decisions. Write down your negotiable vs. non-negotiable expectations for the holidays.
Find the right time and the right way to communicate about holiday plans with loved ones. It can be re-traumatizing to have to say “no” more times than “yes.” If it is uncomfortable letting others know your limitations, consider sending out a group email or text. Stating your position clearly, in writing, and using a neutral means of communication, can be easier than several in-person conversations. A single message to a group also lets you reach multiple people at once, decreasing potential misunderstandings.
You also can use the group message or email to remind loved ones that, should a health flare-up arise, you might need to cancel at the last minute. Doing this in advance can decrease anticipatory anxiety, and subsequently feelings of guilt and shame leading up to the event.
2. Provide alternatives – for others and yourself.
What if you communicate with friends and family and learn that they’re not willing to take the precautions you need to feel comfortable? If you are immunocompromised, you may need to find a different way to celebrate. Please note that I am purposely not offering specific safety suggestions, as I know health precautions are very personal, and individual needs vary. Instead, I want to reinforce that you know what precautions are needed to maintain your health and to feel safe. Don’t second guess yourself.
Look for ways to make the situation work for your needs. Perhaps you could offer to attend a part of the gathering, so that you can go without becoming overly stressed or exhausted. If you typically host an event, you might guard your health and lighten your stress by asking others to bring dessert or contribute another part of the meal. If fear of missing out is concerning you, come up with a backup plan in case you don’t feel well on the day of a big event. For instance, maybe Christmas Eve is a miss, but instead you show up for Christmas Day.
I know that most of us would prefer an in person event to a Zoom call, but remember that video is still a useful option. Using Zoom to light the Hanukkah candles with loved ones in another state, or have a Happy New Year toast, still keeps us connected to the ones we love if we can’t be there in person.
What if loved ones can’t accommodate you or your health fails at the exact wrong moment during the holidays? If it’s not possible to participate, start a new tradition in its place. Maybe you decline a large group gathering with extended family members and you meet with your own family of origin. You might choose to spend the holidays with a friend or family member who is happy to extend an invitation with modifications. Bring a favorite food, watch a holiday movie together in person or through a virtual viewing party.
When the usual options aren’t working out, do something on your own terms that reflects your favorite holiday traditions. Are you more comfortable gathering with others in person with some modifications this year? Brainstorm for how you could bring back old traditions in a new way.
3. Establish boundaries.
It can be difficult to establish boundaries around your health. When it comes to COVID-19, no one wants to be labeled as overanxious or feel like they’re spoiling the party by asking for health precautions. And no one wants to feel unreliable if they have to cancel plans, especially for something special. On top of missing out, you might feel a second wave of disappointment if able-bodied loved ones don’t understand the unpredictable nature of health flares and they question your choices.
Setting boundaries means planning ahead, but it also takes courage. Look for solutions and ways to adapt, but also be courageous this holiday season and ask for what you need to maintain emotional and physical safety. Give your loved ones the opportunity to show up, rather than assuming that they will say no. And when they do, thank them for making your holiday season truly sparkle.
