A Holiday Letter to Loved Ones From the Chronically Ill

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As is true every year at this time, I’ve received several holiday cards from family and friends that have also contained a letter in which they share their news from this past year. I enjoy these letters, although sometimes it’s hard to read about the places people have visited and the things they’ve done since I was virtually housebound all year. Reading these letters made me wonder what I'd put in a holiday letter were I to send one out to family and friends. Here’s how it would read.

Dear Family and Friends,

It’s that time of year again. There’s a lot I love about this season—the colorful light displays in my neighborhood; holiday music (well, most of it); and my own little traditions, such as celebrating both Hanukkah and Christmas.

It’s also a hard time of year for me, and so I thought I’d write a holiday letter, but not the usual “here’s-what-I-did-this-year” kind. Instead, I’d like to share some of my thoughts about being chronically ill during the holidays. This way, you’ll understand better what this season is like for me and, hopefully, all of us will have a better time.

First, I want to acknowledge that I know this time of year is stressful for everyone at times. Expectations can get out of hand, leading to disappointment, crankiness, and sometimes a bad case of the holiday blues. You may have overcommitted to things and then regret it after it’s too late to back out of plans. And even if you haven’t overcommitted, the odds are high that at some point you’ll feel exhausted from having too much to do and too little time in which to do it. (I'm guessing that the length of my “to-do” list will pale in comparison to yours!) I also know that some of you have memories that give rise to sadness during the holidays. I certainly do—memories that have nothing to do with the current state of my health.

Clearly, this a mixed-bag time of year for many of you. I want you to know that I intend to remember that I don’t have a monopoly on stress and frustration and sadness simply because I’m chronically ill. That said, I’d like to share some of my thoughts with you.

I’ll start with this. I wish my health didn’t have to be an issue during the holidays. It feels as if it should be a private matter, especially at a time of celebration. It can be uncomfortable—even embarrassing—to talk about my health. Unfortunately, I don’t always have the luxury of ignoring it. I have to share some of my needs and limitations with you, or the holidays will be a disaster for me: I’ll burn out fast and not be able to keep company with anyone for the duration.

Second, if we’re visiting during the holidays, I hope you’ll remember that, although I’m doing my best to enjoy our time together, I may be in physical pain or feeling quite sick. Such is the nature of invisible pain and illness: what you see does not necessarily reflect how I’m feeling. Please don’t misinterpret why I might not be as animated or active as my looks would indicate I should be. It lifts my spirits to try and look nice, so I’ll be doing my best to dress in the spirit of the holidays. And if I suddenly disappear for a while, I hope you’ll understand that it’s out of necessity, not choice. I’m just resting.

Third, I'd like you to know that this is a particularly hard time of year for me because it brings into focus just how limited my life has become. Every year, I have to accept anew my inability to travel or even attend holiday parties that are nearby. In addition, I can’t shop the way I’d like to. I used to love wandering through small locally-owned shops, waiting for just the right treasure to catch my eye. Part of the fun was unexpectedly running into friends and acquaintances I hadn’t seen for a long time. Now, all my shopping is done online. I know that lots of people shop online these days, but I’m stuck solely with that option.

Fourth, it's also important for me to tell you that, although I can’t do everything you’ll be doing (going to holiday parties, maybe out to dinner and a movie, or driving around at night to see the holiday lights), I want you to have a great time this holiday season. I feel much better about the effect this chronic illness has had on our relationship if you don’t cancel plans just because I can’t participate. So, please, do things that are fun; if you go out to dinner, you can always bring me take-out!

Fifth, I’d like to share how good it feels when family and friends acknowledge that it’s hard for me to be chronically ill during the holidays. I don’t need much of an acknowledgment—just a hug or a brief comment, along the lines of: “I’m sorry. I know this must be tough for you.” I’m sure you know how wonderful it is to feel understood. Well, the same is true for me with this illness. And if I’m aware of some difficulties you’re facing—with your health or something else—I promise I’ll try to remember to reach out to you in the same way.

Finally, I want you to know that I’ve worked hard to overcome feelings of envy and resentment about my limitations during the holidays. One result of having done this is that I genuinely want all of you to have a wonderful time, as if you’re having fun for me.

With love,

Toni

Thank you for reading my letter. I’m the author of four books, including How to Be Sick: Your Pocket Companion (available May 2020), and How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Second Edition) 2018; visit my website for more information.