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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About Today

Sometimes I wake up with pain in my face and forehead like my skull is contracting. The running joke in my family is that an alien life-form in gestating in my brain and I’m experiencing Braxton Hicks contractions. It’ll pass. (Until the day the infant alien bursts forth.) Anyway, I woke up to false alien baby labor this morning.

The best thing to do on days like this is to stay in bed and watch some tv. Maybe take a shower or a bath at some point, since water always feels good. But no pressure. Just take it easy. Give my poor head a break because it’s clearly going through something.

I don’t do what is best, though, because I am determined. I force myself out of bed. I make to do lists–multiple lists of things I have to get done today–or else. Never mind that I can barely get through writing the list. I stare into space trying to think of the word for those little sticks with the soft ends that clean your ears…what are those things? I know I know this. What’s the….?

When I look down at my phone it’s been fifteen minutes, I’ve written three items, and I have no idea what those stupid cardboard fluffy sticks are called but I know I need to buy some of them. The two other items on my list are read everything on each syllabus for my classes and write every paper due this semester. Not really, but it might as well be that unnecessarily ambitious.

Going to the store like this is a bad idea. I’ve done it before. I survived. But it’s not a pleasant experience. I am Dory and I can’t remember that important thing. I make a plan in my head; go to toiletries, then grocery, then leave. But I forget it as soon as I’m in amongst the people and noise and choices. So many choices. Why are there four different kinds of sticks with cottony stuff? That’s too many. And my skull starts to constrict in a wave of pain and I don’t care about Q-tips. Ah, Q-tips! They’re called Q-tips. Anyway, I don’t want Q-tips. I don’t want to be in the store. I want to go home and climb into bed. Why am I out of bed anyway? Whose idiotic idea was this?

“Do you need any help?” a shelf stocker asks me, which is unusual because the staff in this store are not particularly helpful generally. But the stocker seems amused by me. That’s when I realize I have been in this aisle for twenty minutes. Twenty minutes looking at Q-tips. So I left the store without buying anything.

My bookbag in the front seat reminds me that I’m supposed to get stuff done today, but it’s not going to happen. I know that now. My determination is broken. So I drive home mad. I’m mad at myself for not being able to pick between four kinds of Q-tips. Or finish a simple to-do list. Or work on an actually important assignment. Or write a blog post about having a chronic illness.

I’m mad at myself for not being able to manage better, even though this is the only one day and I’ve gone a couple weeks without wasting an entire day in bed. I’m mad that any day is wasted. I’m trying to make up time here! I have to use every day. I have to finish to-do lists.

But by the time I get into bed, I’m too exhausted and my pillows are too comfy for me to be mad anymore. I’m pretty sure the alien baby has changed positions because now my skull is threatening to split open at my temple. So I can’t think about a paper or write a post or remember to eat today.

Tomorrow I won’t be mad at myself for today. I’ll be a little frustrated by the additional work I have to do. And embarrassed about that whole Q-tip fiasco. But I won’t be mad. Because a bad day is a bad day. I’ve been through bad weeks and bad months and bad years. I came out the other side of a bad decade.

Bad days are days I don’t get back. That’s true and it sucks. Nothing gets done (except parts of this blog post). I don’t see my friends or make new connections. Occasionally I miss deadlines and the type A side of me dies a thousand deaths in agony. But mostly the world goes round and I binge an entire series on Netflix (only actually watching some of the episodes because the light from laptop screens is refracted evil). And right now, in a moment of rational clarity, I know bad days are not my fault. I can’t control them. I avoid my triggers, but they’ll happen anyway. So what’s the point of being mad at me? It’s just mean. I’m trying my best here.

I know I won’t remember this revelation the next time I wake up feeling like my cranium is being squeezed from the outside while stretching on the inside. I’ll worry I’m going to waste a whole day again. I’ll convince myself that everything needs to be done and it has to be done today. So next time, all I have to do is read this post, try not to roll my eyes–which will hurt like hell–and surrender. It’s just one day.