by Kacie Fleming
Guys, the holidays are hard. I know, they're hard for everyone to some extent. But trust me, they are extra hard for those with a chronic illness.
I used to love Christmas. Like most normal people. But over the past couple years, I've realized that I'm not a huge fan of Thanksgiving and Christmas anymore. A large part of that is simply because they take place in the winter time, which makes me feel even worse -- air conditioning alone causes me pain, so of course the cold temperatures, even if I'm indoors, make my pain worse. So this makes winter, and therefore the holidays, even harder.
But I've also recently realized the now-obvious reason that I'm not a huge fan of the holidays: They're just so hard. Because doing much of anything with a chronic illness is hard. And this is true for anyone with a chronic illness. But for me personally, considering some days showering is my accomplishment and great days are when I do the dishes and make dinner? We have only so many spoons to use. And when it comes to Thanksgiving celebrations, which involve making yourself presentable, driving or riding to the gathering, then being at the gathering for hours ... Most spoons are already gone by the time you've done your hair and makeup and gotten dressed. Add to Christmas the whole shopping and wrapping gifts thing, and the decorating that likely won't even happen.
Further, if you have certain food needs, as many with chronic illnesses do, that's an extra burden. You most likely have to make all your own food ahead of time (watch the spoons disappear before the big day's even begun), figure out how to transport it, figure out how to heat what needs heated/find room to refrigerate what needs it once you're there, etc. (Heaven forbid you travel eight hours away and not be able to transport perishable items. Ahem.) All of these are small things alone, but add them up, and they're just one more additional stress after another weighing on you. And we all know that stress makes anyone feel worse.
And that's just everything leading up to the big day -- we're not even to the actual meal yet. When you're sick, just sitting down to eat at a table (which some cannot even do) and the action of constantly raising your fork to your mouth and chewing can be exhausting. I frequently have to take a breather while eating at family gatherings just because sitting upright in a stiff chair and raising my arm that far to my mouth over and over is straining and tiring. Then try to hold any kind of conversation, while also foggy as usual with any number of other issues like stomach pain or dizziness or sensory overload going on, and also juggle the inevitable, often well-intended but sometimes rude, inaccurate comments and questions that are sure to come. It makes me exhausted just thinking about it.
So the answer for those with the chronic illness? Pace yourself the best you can, and don't be afraid to say no. In my few years being sick, I've gained a thicker skin. I still feel guilty for things I can't do (though it's not my fault), and I'm not sure that will ever totally go away. But I used to feel so apologetic about being gluten-free or saying no to things I knew I couldn't do and felt like I had to always explain myself. And also felt like a total weirdo for my food needs. But now that I don't eat gluten, dairy, soy, corn, nuts, nightshades, or refined sugar? I know that's what my body needs--I'm convinced of it by the way I feel when I eat those foods. But most many people don't get it and won't try to because it's so abnormal to them. My needs and my problems are an inconvenience to others, way out of the ordinary, and hard to grasp. But they are part of me now, and my needs are requirements, not preferences, so I ... kind of don't care what others think/say about it anymore. I can't care.
So this Thanksgiving and Christmas? I'll be shopping online (which I've already done a lot of), eating lots of healthy, homemade food (in hopes of making everyone jealous of Kacie's "weird" food), not decorating besides our tree -- and that only because my husband will help -- and just trying to breathe.
This article was originally published here, and is reposted with permission.
Kacie Fleming has crammed a lot of learning about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her days (and most nights) working on her handmade jewelry and subscription box business.