How a Holiday Letter from the Chronically Ill Might Read

I’ve already received several holiday cards from family and friends. Some include a letter in which they share their news from this past year. Especially with the easing of sheltering-in-place, I’ve enjoyed hearing about short trips people have been taking even though I’m unable to venture far from home due to chronic illness. Were I to write a holiday letter, it would read something like this:

Dear Family and Friends,

I hope you were able to get out and about this past year now that some of the pandemic restrictions have eased. This is my first-ever holiday letter. That said, I don’t have anything to share about exciting places I’ve visited since I’m pretty much housebound by ongoing pain and illness. This is not a complaint. It’s just the conditions of my life.

I thought I’d write a different kind of holiday letter in which I share what it’s like to be chronically ill this time of year. I hope that, by doing this, you’ll better understand what the season is like, not just for me, but for other people you may know who are struggling with their physical or mental health.

You might even know someone who has what they’re now calling Long Covid. Some of their symptoms are eerily similar to those I’ve been living with ever since I contracted a viral infection in 2001 — yes, that long ago.

I want to start by saying that I’m aware of how this time of year can be stressful for everyone, regardless of the state of their health. People often feel overwhelmed by everything they need to get done. Others may have such fond memories of past holidays that they find themselves feeling blue this time of year (this can happen to me). I just want you to know that I recognize that I don’t have a monopoly on stress and frustration and sadness just because I’m chronically ill. However, my limitations are a particular challenge during the holidays because they remind me how much my life has changed since I became ill over 20 years ago.

If you and I are fortunate enough to visit in person this holiday season, although I’ll do my best to be good company, the odds are high that I’ll be in pain or feeling quite sick — even if I’m smiling and laughing. This is the nature of invisible pain and invisible illness: what you see does not reflect how a person feels.

I’m sharing this so you’ll understand that if I suddenly become quiet or leave the room to lie down, it’s not because I don’t want to be with you or don’t care about you. I care deeply or I wouldn’t be writing this letter. There’s nothing I’d love more than to be able to participate fully when I’m in the company of others!

I also want you to know that it feels good when people I’m close to acknowledge that it’s hard for me to be chronically ill during the holidays. I don’t need much of an acknowledgement — just a brief comment, along the lines of “It must be hard to feel sick during the holidays” or “I’m sorry that missing out on gatherings makes this time of year tough for you.” I’m sure you know how great it is to feel understood. 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, please 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 and the wish that your holidays are peaceful and full of joy.

Toni

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Toni Bernhard is the author of “How to Be Sick,” “How to Wake Up,” and “How to Live Well with Chronic Pain and Illness.”

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Toni Bernhard

Toni Bernhard

Toni Bernhard is the author of “How to Be Sick,” “How to Wake Up,” and “How to Live Well with Chronic Pain and Illness.”

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