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What the Reality of the Holidays Is Like Because of My Rare Disease

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When most people think of the holidays, they think about spending time with loved ones, gifts, shopping, and all-around happiness. However, as someone with a few chronic illnesses, I have a different feeling this year. I can’t help but dread this so called “most wonderful time of the year.” Why? Honestly, it’s mostly about the food.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Of course, I’ll be expected to take the kiddos and go to Thanksgiving at my in-laws, and then do Thanksgiving with my family. Then, the same thing on Christmas Day. For someone like me, who has gastroparesis (GP) secondary to Ehlers-Danlos syndrome (EDS), this means digestive chaos. Now, my own family has been wonderfully supportive and my grandma is already planning GP-friendly recipes to serve this year. I could not be more thankful that she’s going to the trouble of helping meet my digestive needs.

On the other hand, there’s my in-laws. From the start, they’ve all sort of brushed off this whole chronic illness thing. I get asked questions like “Hey, can you help me carry this in the house?” No, I cannot, because my joints are flimsy and I’ll likely dislocate something. Or, “Hey, we’re throwing this barbecue.” Well, as fun as that sounds, I know there will be nothing there I can eat because everyone conveniently ignores the fact that gastroparesis means I can’t digest 90 percent of traditional barbecue foods. Now, I can always bring my own food with me. But just once it would be nice if someone would think ahead and make at least one dish I can actually eat.

I realize this sounds like I’m complaining. I realize that I should plan ahead and bring whatever accommodations I need to. However, sometimes I am so sick and tired of accommodating, especially when it comes to family. Family is supposed to love and support you, even if they are your in-laws and didn’t raise you.

A couple weeks ago, I was wearing a knee brace, because I was feeling a little unstable that day. My mother in law asked “Oh no, what happened?” I replied, “Literally nothing. This is what living with EDS is like.” She just just brushed it off. For someone who claims to have researched EDS to see what I was dealing with, she seems to not understand much.

Unfortunately, this Thanksgiving I’m not looking forward to sitting around a big table of my family and watching everyone chow down on turkey, stuffing, casseroles, and pie, and not being able to eat hardly any of it. I’m not looking forward to getting weird questions and glances from family because they still don’t understand that it’s not that I don’t want to eat that food, it’s that I can’t. I’m not looking forward to that couple of hours after dinner when everyone is talking and laughing, and I’m stuck in the bathroom, vomiting, because my stomach couldn’t handle the rich food.

So, if you have family member who is living with a chronic illness, take time out of your day to ask them how they’re doing.

When making holiday plans, ask if they need any sort of special accommodations.

Just show that you care, and I guarantee they’ll appreciate it.

Originally published: October 19, 2018
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