Happy Thanksgiving! I’m Probably Lying.

 

Small talk is the worst.  Not just for people with chronic illness–really for anyone who doesn’t fit expectations–but certainly for us. Simple questions lead to awkwardly personal explanations, and everyone involved is praying for a way, any way please God help, out of the conversation. And here comes the dreaded small talk season: holiday parties.

I have mentioned before on this blog that I try to be honest, but I tend to throw that rule out the window while speeding down the highway at 90 miles an hour during the holiday season. Because I actually enjoy the holidays. I love going to my family holiday gatherings and catching up with my aunts, uncles, and cousins. The last thing I want to be during this time is honest.

This is how that exchange would go:

Family Member- Hi, oh, you look so great! How are you?

Me- Thank you! I’m miserable. My energy is at a 12 year peak but I have migraines and other pain so often I still just lay around most of the time. I literally don’t have time for a life because I’m busy laying in bed feeling like shit. How are you?

Family Member- Oh my…that’s so awful. I had no idea. Are you ok? Is there anything they can do? Have you tried [insert therapy here]?

And it would devolve from there. Because they would feel like I am confiding in them, when really I am simply telling them the day to day of my life. It’s uncomfortable that answering the question “How are you?” honestly might be mistaken as revealing too much when I’m not even trying to open the flood gates. My everyday existence shouldn’t be a secret, but it kind of is.

Don’t get me wrong, I want the people in my life to know what chronic fatigue syndrome is actually like. I want them to know what I’m up against. I want them to care when I share fundraising and awareness campaigns on social media and they don’t so much as of right now…so maybe I need to be more honest. But I don’t want to have that conversation ten times in one day. And  I want to hear about them. I want to discuss Stranger Things. I want make dumb jokes and laugh and reminisce. I want to be happy.

I haven’t figured out how to not lie and still feel OK in these conversations. The truth is pretty complicated. I could send them here. “Please see my blog for the most up-to-date and honest look at how I’m doing.” But that seems a little off-putting. Plus, who wants to read? So I do what I suspect most other people (sick or not) are probably doing and straight up lie.

I think the reason lying about how I feel bothers me is because chronic fatigue syndrome does not get the automatic recognition that a condition this debilitating should. Thanks to incredible work of organizations like Millions Missing and the upcoming documentary Canary in the Coal Mine by Jennifer Brea–who is a warrior. For real. She may be the reason that people now comprehend me when I say “I have chronic fatigue syndrome.” She gets shit done. No excuses.–CFS isn’t as unknown as it was when I was first diagnosed. No one knew what it was then. My doctors didn’t know what it was. They read it out of a book and said that’s probably what you have because, yeah, it’s not this other stuff. A lot of people didn’t think it was real.

Now my friends forward me Buzzfeed listicles about it.

But part of me is scared that every time I lie about how I’m feeling, I’m diminishing the work of the #millionsmissing warriors. Or proving doctors who told me to shake it off and get back to school right. Or justifying the nonchalance of people who know that I suffer when I ask for their help.

So I lie because I want to enjoy the interaction in the moment, but I feel the weight of all the lies over all the years together as a pattern contributing to my own sense of belittling. Which is pretty messed up. So I don’t want to lie. But I also want to get through Thanksgiving feeling OK about myself, and that’s hard to do no matter who/where/what you are, let alone if you have to repeatedly admit out loud that your life is basically laying in bed and crying because your head hurts and you wish you could go outside and see the people.

This blog is one attempt to right the wrongs of all my lies. (Although I’m not always completely honest on here either…I don’t know who is reading this.) Here I can put down what I’m going through without feeling like I am wasting time with someone I like on things I don’t want to talk about. I can take my time and think about how to describe what it feels like. I can pick a movie reference that fits. Ya know, the important stuff.

Small talk isn’t always the place for honest answers about how I’m doing. Ethical philosophers might argue differently–heck, part of me argues differently, too–but it doesn’t work, not comfortably. So the conversation with a cousin or aunt could go something like this:

Family member- How are you?

Me- I’m doing alright. Energy’s good. Pain could be better. How are you?

And the conversation moves on and eventually we get to Stranger Things and gush about Gaten Matarazzo and Millie Bobby Brown over pieces of black bean brownies. It’s by degrees honest and evasive. It’s not a flat out lie, so that’s a check mark in the good column.

If you’re  wondering why I can say all of this here, but am struggling with the idea of small talk: I can be honest here because I’m not trying to gauge how much you actually want an answer to that worst of all polite questions: “how are you?” I can be honest because I’m not answering a question at all. I’m just telling you.

 

 

 

 

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