Here's what one chronically ill woman wants you to know about the holidays.
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, like 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.
I know this time of year is, at times, stressful for everyone.
Expectations can get out of hand, leading to disappointment, crankiness, and sometimes a bad case of the holiday blues. 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 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.
This a mixed-bag time of year for many of us. I want you to know that I know I don’t have a monopoly on stress and frustration and sadness simply because I’m chronically ill. That said, I have some thoughts on my experience that I'd like to share.
1. 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 staying silent. 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.
2. 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 appearance would indicate I should be. It lifts my spirits to try to 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.
3. 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.
I also 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 now, it's my only option.
4. Though I can't do everything you'll be doing, I don't want you to cancel plans just because I can't participate.
You'll be going to holiday parties, maybe out to dinner and a movie or driving around at night to see the holiday lights, and I'm glad! I want you to have a great time this holiday season. I'll 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 come along.
So, please, do things that are fun! If you go out to dinner, you can always bring me take-out.
5. It feels incredibly good when you acknowledge that it's hard for me to be chronically ill.
I don’t need much of an acknowledgement of how difficult the holiday season can be for me — just a pat on the shoulder or a short comment, such as “I’m sorry; I know this must be tough for you.” It makes me feel understood, which is something everyone wants in life.
If I’m aware of some difficulties you’re facing — health or otherwise — I promise I’ll try to remember to reach out to you in the same way.
I love all of you and hope your holidays are fun and filled with joy!
This story originally appeared in Psychology Today and has been reprinted here with permission.