How to Survive the Holidays With Chronic Illness

There is one sweater in my collection that I knit (and unknit) three times. Part of the downfall of knitting sweaters is that until they are fully knitted and washed, you aren’t able to try them on and see whether you like the style on you the way you thought you would and whether the one you made fits you well. In truth, much of the reason the sweater didn’t fit is that I was using a different size yarn, didn’t do the calculations correctly, and the yarn stretched a bunch when it was washed. In short, I made mistakes.

As with knitting, I’ve made a lot of mistakes around the holidays. But the great thing about mistakes is that I can learn from those to steer me toward a more satisfying and sustainable holiday present and future. Here are some things we can do to more fully engage, participate in, and enjoy our holidays even with our chronic conditions – some ways to knit up a better holiday.

Decide who and what matters. Yup, this is a drum I’ll keep banging. Until we are clear about who and what matters, we can’t make the best decisions. If we are saying “yes” to invitations out of obligation or historical precedence, or any reason other than spending time with the people that matter doing the things that matter, it’s time to circle back and reconsider. Just because you used to go to your husband’s office holiday party doesn’t mean that’s what still works best for you. And, except for the smallest children, just because something doesn’t work for you, that doesn’t mean others in your household have to be limited by your decisions. Your daughter still wants to go to your aunt’s 12th Night Party? Great, can she go with someone else so you don’t have to spend your energy that way?

In this equation, the what is almost as important as the who. What do you want to be doing – do you want to share a meal? Open stockings? Cook together? Be at the candlelight service? Do you want to avoid one or more things? Pay attention to the things you most want to do and organize around those. Getting clear about how we spend our time with the folks who are dearest to us is key.

I think boundaries feel tough for many of us. However, boundaries are loving all around. Boundaries are loving to you, because they demonstrate self-worth, and they are loving to the other person because they help clarify what works and what doesn’t. Perhaps you’re thinking – how is that loving to the other person? Here’s how: in the past, I used to say “yes” to invitations without really considering whether or not I wanted to go. Now, I work to stop and consider a request or invitation (obviously, my illnesses have played a big role in this).

I now say “no” a lot more. However, because I say “no” when I need to, that means when I say “yes,” friends know I’m doing it because I want to be there with them. I’m prioritizing that time with them. I’m not saying “yes” out of guilt or obligation. My friends and loved ones can trust my yeses and my nos. Think how helpful that is – how often have I stopped myself from asking for something because I didn’t want someone to “feel obligated?” However, when friends have boundaries with me, I know they will say “no” when they need or want to and that means I’m freer to ask.

Once we’ve gained some clarity about what things we’re going to give our most precious resources to (our time and energy), how can we set ourselves up for success? Can the events we’ve agreed to be spread out so there’s time for recovery between them? Can my contribution be limited to what I can shop for or make in advance? What things can I set up prior to attending that will help people know what to expect? I can only stay for two hours, or is there a spare room where I could lie down if I get tired? I can either help with the meal or stay for the meal, which would you prefer? You are the expert on you and your conditions. No one else knows what it feels like to be in your body. Help others know how to navigate by setting them and you up for success with clarity in advance.

Holidays are often complicated times, even for the healthiest people. Whether they bring up reminders of loved ones who are no longer with us, memories of trauma, or dredge up relationships that aren’t what we wish they were, there are often hard feelings that accompany this time of year. Feel your feelings. It is hard to reach adulthood without loss, and for those of us with chronic illness, these are often magnified and multiplied. There are things we can’t participate in, ways in which we won’t ever be the same, things that are out of reach – along with whatever baggage the holidays already had. Make space for your own grief. Whether it’s lighting a candle, saying a prayer, telling a friend, or talking yourself through a relaxation practice, make space for the tough and real emotions that are likely to emerge.

When you do attend events, don’t lose the thread of self-care amidst the bustle. It is easy to get wrapped up in the swirl of events and forget to look out for ourselves. Here are a couple of simple practices that can help you stay connected to yourself so perhaps you won’t need so much recovery on the back end:

1) Carry your phone in your pocket and set it to vibrate every 20 minutes or so. Use that reminder to do a body-scan. Starting from your toes, take a few deep breaths and use your attention to scan your body. What are you feeling right now? What do you need? Notice your own experience and then attend to your needs. Perhaps you’ve been standing for too long and just need to move the conversation to the sofa. Maybe you are thirsty, need to go to the bathroom, or need to lay down for a few minutes. Whatever you notice, check in regularly and try to meet your body’s needs.

2) In advance of attending or hosting, decide how long you think you can participate. If you think you can last for 90 minutes, set an audible alarm on that phone in your pocket for 70. That way you can be aware of how long it’s been and check in with yourself. Can you make it the next 20? Do you need to leave now? If you are continuing on, set the phone again to alert you for the next amount of time you think you can maintain.

3) Bring a touchstone in your pocket. Having a small smooth stone, or some other talisman, can be a tangible reminder. What things are you likely to need help or support with during this event? To remember yourself? To not spend too much time with Uncle Carl? To avoid sweets? You can use this object to help you remember to take deep breaths, to leave a conversation, to move away from the dessert table.

Ideally, the holidays, like a sweater, can warm us and leave us feeling cozy. We want to get to January feeling lifted, buoyed – not wrung out, hung over, and more depleted by how we spent the last six weeks; or worse yet, in a relapse. We don’t want to unravel. Above are some of the strategies I’ve picked up that have helped me participate more fully and enjoy myself without compromising myself. What about you – what gets you through the holidays? What have you learned that will help you do it better this year? However you celebrate (or refrain from celebrating), I hope there is comfort and joy ahead.