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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