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What Not to Say to People With Chronic Illness During the Holidays

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This year will be my second Christmas with chronic illness. I’ve always loved the festive season. I adore the lights, the parties, the time spent with family and friends and the food (such decadent food!). Or, at least, I used to. Until I became ill.

This year, I won’t be on any nights out. Any events with friends will have to be strategically planned for maximum energy, will have to start during the day and I almost certainly will be leaving early, if I make it at all. I will also be on a strict elimination diet, so almost all of my favorite foods will not be allowed. I will be bringing Tupperware to events, filled with prepared, carefully planned and measured foods. My family will have to plan all the Christmas activities around me, which makes me feel extra guilty and selfish, even though I know they are happy to do it if it means I can come. If they didn’t, I wouldn’t be able to participate at all. I’m looking forward to Christmas, to spending time with the people I love, but learning how to manage my condition while maximizing my ability to join in the festivities is a big adjustment, for both me and the people around me.

If you have someone who has a chronic illness in your life, you may be uncertain how to address it around the holidays. Here’s a few things that I would avoid saying to someone with a chronic illness:

“Is that all you’re having?”

Personally, food is a big issue for me (and can be for a lot of people with chronic illness.) Please don’t draw attention to how different/minimal my meal is. I am painfully aware of exactly what I’m eating. Inside, I am having a mental battle between what I’d like to eat, what I have to eat, and the guilt I feel over wanting the foods I can’t have.

“A little bit won’t kill you.”

It may not kill me, but it will hurt like hell. It will make me sick. It will throw off my treatment and affect my recovery. It will send me into a spiral of guilt and anxiety, to add to the physical nausea. I am doing my best. Please don’t make it harder for me.

“Ah, but it’s Christmas!”

I’m well aware it’s Christmas, thanks. I’ve already endured weeks of food advertisements, of seeing friends’ Instagramming their mince pies/celebratory cocktails/Prosecco/boxes of roses. I would love to be able to join the festivities. Please don’t make me have to say no, again.

“You’re going to bed already?”

Chronic fatigue is exhausting. I promise you, if I am going to bed during a family/friends gathering, I have stayed out well past my limit and will pay for it for the next few days. I don’t want to have to leave. I would give anything to be able to stay up with everyone. Please don’t make me feel guiltier than I already am.

“You’re very quiet.”

Another side effect of chronic fatigue (and a lot of other illnesses) is brain fog. When it sets in, it takes a lot of energy to focus on the conversation, and sometimes I can either process what is being said or talk, but I can’t do both at the same time. I promise, just being there and tuning into the conversation is making me happy, but I would greatly appreciate it if you didn’t point out any lack of participation. It’s not lack of interest, just a dwindling supply of energy.

I wouldn’t presume to speak on behalf of everyone with a chronic illness – people have different triggers and things that would upset them to hear, but these are a few phrases it might be best to avoid. Just remember: the holidays are about being with the people you love. Ultimately, all we want to do is spend as much time as we can with the people we care about. Some days we might be able to interact a lot – others, it may be minimal. Please don’t take it personally.

And to my fellow fighters – it can be so easy to feel guilty for not being able to celebrate the holidays exactly how you might like to. It’s OK to be frustrated or sad that you can’t participate fully, but try to enjoy what you can and know you are doing your best. It is not your fault you are sick, and you are not alone. In the end, the holidays are about spending time with the people you care about. Just do your best, enjoy the time you are able to spend with them and then rest until you can rejoin the celebrations. I hope you have a wonderful festive season.

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Lead photo by Thinkstock Images

Originally published: December 8, 2016
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