An older black woman sits at a snowy window wearing a bright red christmas sweater

My Rare Disease Holiday Survival Guide

Living with a rare disease like narcolepsy means that I have to live my life around my symptoms.

Unfortunately, we don't get the holidays off from our rare diseases!

I tell people about my needs ahead of time

Living with a rare disease usually means having needs that other people might not think of or even understand. I have to go the extra mile to let people know what I need to participate in get-togethers and other events.

Some of these needs might include a ride to and from the venue. Other needs might be more subtle, like a designated nap spot for those times when I feel like I won't be able to make it through the entire event without falling asleep or getting groggy and confused from excessive sleepiness.

By informing people of my needs ahead of time, I help ensure that both parties have a good time.

I take many rest days

Rest days are especially important for me during the holiday season. To best take care of myself, I make sure to schedule many rest days during this time of year. It's important for me to be able to have energy for myself and the important events I want to participate in.

It isn't always possible to go to everything that I want to with a rare disease like narcolepsy. Having a rare, chronic illness means that I have much less capacity for activity than the average person. When I neglect my rest, I end up with worsened narcolepsy symptoms. Nobody wants that! Therefore, self-care is just as important as anything else during the holidays.

I choose how to use my (limited) energy

I don't have much energy when it comes to completing basic tasks, like cleaning, shopping, and working. Likewise, I don't have much energy for the "extra" parts of life.

This means that I can only participate in a handful of events during the holiday season. I have to be careful about what I spend my energy on – this means saying "no" to things I might want to actually attend. By doing so, I ensure that I am able to show up fully for the things I really care about.

I celebrate in small ways

Celebrating during the holiday season doesn't have to be a whole to-do. I like celebrating with small traditions that I can participate in even when feeling low-energy.

Some of these activities include baking (I set a timer and nap in between cookie batches!), holiday card crafting, watching holiday movies, drinking tasty hot drinks, crocheting winter-wear for holiday gifts, and more.

I reflect on the new year

The holidays can be isolating. This season can bring up a lot of intense emotions as we reflect on memories of holidays past. During this time, I like to make sure to reflect on the good and bad parts of the past year and set goals for the upcoming year. It helps me feel connected and like I have things to look forward to.

What are some of your favorite holiday survival tips when living with your rare disease? Share in the comments below.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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