Liar, liar pants on fire!
I lie! It's actually kind of comical, because I have never really been a good liar. Even as a child, I was horrible at it, even simple little lies that weren't said in malicious deceit, but like doing a fun, harmless little prank or a happy surprise. Other kids and family quickly learned, do not tell her, she can't lie. I have no poker face. Which in a way isn't a bad thing, not like I am big on gambling. But friendly poker games where the money is matches or just chips where you only play for fun no money, just glory in winning etc. I can't even do that, well I CAN obviously, but I quickly loose. My face tend to be an open book. But yet here I am, telling you all that I lie. And not just a little bit either, I lie almost every day. And this lie, I seem to have gotten good at, that or it could be a more cynical reason this lie is successful, people don't really care - so they happily accept my lie.
Whenever someone asks me "how are you?" I lie. I put on that mask that I have been trained to do. I come from a home where you do not whine, you do not complain, you do not share outside 'these four walls'. Oh it comes back to me now. My mom has RA, she's the one who "gave" it to me. (I honestly do not blame her for it, it's not like she for one thing actually knew when she got pregnant with me, or my brother or sister for that matter. And I also know that it is something she wouldn't even wish on her worst enemy.) When I was little I saw my mom, I mean truly SAW her. I saw her when she bad days, I saw her when she had really bad days, days she had to tell her 3-4 year old "mommy can't do hugs today". Which didn't hurt me, well it hurt me as a kid. But not because I thought she didn't want to, I can remember feeling sad for mommy hurting so much that she couldn't take hugs. Hugs that feel so good. I accepted that, mostly. But often I wanted to make mommy feel better, so I would offer to give her a hug, promising I would barely put any pressure behind it, simply lean myself into her, without fully touching. Cus that had to help.
I digress, my thoughts here were on the mask I learned to put on from I was a child. My mom did it all the time. I SAW her! I saw her in pain, I could see her pain, even though she rarely actually spoke about it, or complained. I saw it, and I also saw the smile she would put on her face and say "Oh, I am doing fine, thanks!" when asked. I was told early on not to speak of things that happen 'within these four walls', meaning our home. She didn't want people to hear how she had laid on the sofa for a day on bad days. Those days were private. But it was hard not to speak about it. Because my mom got disabled around 40. And people would judge my mom. Grown ups would prod about my mom. Make snide comments how she couldn't be THAT disabled, just lazy not working, as they saw her out walking almost every day, and what example she was to her kids. We were getting trained to be lazy, and just mooch of the government. Doomed to also turn to disability when we grew up, funny thing(depressing actually), I might very well head in that direction in some years from now.
When I was 12, I couldn't take these snipes at my mom anymore. I was(and still am) very proud of my mom. So I would start to reply that, yes of course you see her out for a walk almost every day, without the walks she would barely function and you do not see her for the rest of the day! You do not see the pain she lives in. They had never seen how sad her eyes were when she told her child not to hug! Then they would obviously bad mouth me, for being a rude child...
I think most people with chronic illnesses lie, we lie a whole lot. Sometimes I think to myself before I answer someone and lie, that perhaps I should tell the truth? But then I think, no one really wants to hear the truth. Even those that actually know I have RA, they don't want to hear the truth. The truth is horrible, the truth would create awkwardness. Awkwardness because people don't want to hear it, and if they heard it, they would feel forced to pity - and I do not want pity. I do not need pity. Pity won't do me any good. That kind of awkwardness won't do me any good, and if I did tell people the truth every time, they wouldn't want to talk to me or hang out with me much, because who would want that kind of depressive outlook every time they were to be in my company. What I do need though, and would appreciate would be some understanding. But that seems to much to ask for, so I lie. I do the one thing I am not all that good at in any other setting, I do the thing I was taught not to do, but at the same time the very exact thing I was taught to do - slap on a smile and lie through my teeth.
Sometimes I even lie to myself, because the truth is overwhelming and rather depressive. The truth is for the past year I can't remember a day without pain, not just a little pain, but a constant mind boggling pain. My average normal, good days these days I am at about a 5. I lie about that sometimes too to doctors. I've been to the ER and to doctors for other things than the RA, and when they ask "how much pain are you in?" I sometimes lie. I am afraid if I told the truth they would think I am complaining, or worse; exaggerating to score drugs. So there's been times where if I were to be honest I would say 8 or even 10! "It is unbearable today, it took me 2 hours just to muster the thought of squeezing a pair of socks on as my feet hurt so much."
Sometimes I think to myself, my feet will one day kill me. They will just explode, as that's how they feel like some days. Even if I sit very still, keeping them elevated with a soft plush pillow under in a desperate attempt at getting no pressure, they throb endlessly. I think I am going insane. I am trying to work, or watch TV, or read - but the dominant thoughts in my head is not on my work, the TV show or the words in the book, but "oh f's sake, my FEET! I kind of wished I died, at least then it wouldn't hurt!" But I do not want to die, I am not suicidal. But I think people who suffers from chronic pain, can perhaps understand that every now and then, that very thought might pop into your head. But you can't say that to people. So you lie.
How would people feel if I told the truth, that I feel trapped. I am young, but I feel so old. I want to go for walks every day, but it's not every day I can that, as my feet hurt so much. I feel stuck in a vicious circle. Walking and more exercise will do me good, but right now - walking or exercise will do me worse, tap me of any little remaining energy I have left, that I need to spend working.
I keep hearing about flare-ups, as they are supposed to be a thing that comes and goes. Well, when will my flare-up go away, if we at this point can call it that anymore? What came first, I do not know. But I did have a PE last year, and from around that time my RA has been going high wire. It is in over-drive mode. Luckily I have a good rheumatologist, she keeps trying new meds, and she seems to see through my lies, because when I had self assessed myself to pain at 5-6, and how much RA affect my life at an 6, she put me at 8-9.
It is kind of funny, if you were to ask people about me the things you would hear is how positive I am, how polite I am, how nice I am and how no matter what gets thrown at me I seem to always take it stride and finding the silver linings, optimistic nature. And I do, I do my damnest to find the little sliver of silver, I try my best to look at the world through a glass half full kind of view. But often internally I am not all that positive. Often times I think things like "bloody hell!" or stronger curses. Sometimes I do question if it is worth it to go on, keep fighting. Because that is what it truthfully is, every day is a battle. It is a battle against the pain, against the things my body wont do - that I want it to and need it to do, and the things I SHOULD be able to do as I am not even 30.
I think some of this lying needs to stop. I do not think I should answer 100% truthfully when asked how I am, but not directly lie either. Get better at perhaps saying something like "you know, actually I am not all that fine, I am having a bad day, but I will be fine, thank you for asking!" And to those that simply ask that question without meaning it, you too should stop lying, either stop asking that as the go to convo starter or you need be prepared that you might not get the usual smile and "Oh, I am doing just fine, thanks!" so you might want to be prepared to listen, so you don't actually stumble big time and reply "Oh, that's good!".
Or, who am I kidding? /puts on her smile: "I am fine, how about you?"
How realistic do you find RA commercials?