It’s that time of year again..the season in which everyone wonders about me. Everyone wonders if I’m selfish, a flake or just plain lazy. It doesn’t really occur to most people that when I say I’m sick I’m actually really sick…umm..DUH. Well no, that’s kind of harsh. I’m sure there’s a few people out there who believe me. The problem with this scenario is though that those people who believe, quickly “unbelieve” me when they see me out and about the next day at some other event. Yeah, it is a real *B* this invisible chronic illness. It doesn’t even let you be sick properly. Just makes a damn liar out of ya.
How this Rheumatoid Arthritis gig works is that one day your swollen like a melon. It could be anywhere: my ankle, knee, wrist. Although wrists and elbow don’t usually keep me out of commission. I show up to events
and gatherings because at least I can walk.
Otherwise below the waist means I’ll be limping and the questions alone are just brutal. Because when those start people come out with all sorts of, “oh have you tried?” Or, “my cousins’ uncle’s daughter had pain in her back and she took this magic potion that healed her right up. You should try it too.”
“Yes, yes I have tried. This has been with me for over 20 years you bet I have tried that and the next thing that’s about to come out of your mouth, and a million and one other things.”
The other wonderful thing about this disease is that the pain and swelling can last for days yet it can disappear just as easily as it shows up. So, if I’m not able to walk one day, the next day you might not even be able to tell that I needed help walking to the bathroom yesterday, and was hold up in bed all day with a heating pad on my knee (or a cold patch. Pick a healing, soothing pack of your liking for that week). When people see me they think…”ah what a flake”.
I know, it’s not their fault. I can’t blame them for all of it. They don’t understand how it works. And it is very hard to understand. These invisible kinds of illnesses are mean and heartless like that. They take so much from you and then they whisper to your friends, “hey she doesn’t like you that very much. She ditched you yesterday and here she is today at some other event just ready and eager as ever.”
We had a get together the other day. I was able to make it to that one. But I was up all night with pain so the fatigue was unbearable. Combine that with leftover pain and you actually want to be a flake and just say, “sorry something came up last minute I can’t make it.”
I could barely walk or keep my eyes open for that matter. People think I’m being rude. “Was it something I said?” They think. “You are on a diet, that’s why you’re not eating.” No, dude I’m full of so many drugs I have forgotten how to hold a spoon for the time being.” Sorry for not being a better meal companion but right now I’m not sure if its ketchup from my kid’s fries or the band aid came off my finger from when I cut myself earlier trying to clip my fingernails. #Justgonnaquietlywipeitnodiscussionneeded.
Along with all of this comes the guilt. Guilt of being a terrible friend. Guilt of being THAT friend who keeps canceling on everyone and can’t give a decent reason. “I’m not feeling well” is not really a decent reason to people unless you yourself suffer with a chronic illness that can’t be seen. The guilt of being a terrible parent. Keeping your kids locked up with you. The guilt when your husband casually mentions, “our kids aren’t social enough.” Double guilt when plan is being rethought and you say, “ya know my shoulder just wont move, I feel I’ll sit this one out.” And you hear, “well you didn’t go last time either, you sure you wanna skip again?” It’s not about being “sure” it’s really not a choice. No one wants to do this to hurt you or make you feel bad and some part of people think that some of it is in our control. If we just tough it out. It’s really not that bad. How can the shoulder be really “stuck”? A body part can’t just not move one day and start moving the next.
Deep down inside you know it’s your fault because, well, lets count how many events you had to cancel because you just couldn’t go. How do you change that? You can’t. Great, so add helpless to the list.
There is a lot underneath the surface. I know no one means to hurt or offend but it happens. I talk like it’s me against the world but I know it’s not. You stop explaining and just shut down. It becomes easier to just shut down and stay inside. I mean inside your own self rather than explain yourself to people because it’s JUST. SO. EXHAUSTING.
It’s probably not the healthiest attitude and doesn’t help the whole process but…again…exhausting.
So I guess this is my declaration to the world, I’m not a flake, or a hermit. I’m just suffering from a chronic illness or two. Let my flare up pass I’ll be back in the world. Or maybe come over and have a cup of coffee with me. But you’ll have to sit on my purple chair next to me while I lay there in my bed drugged up wrapped in ice packs and heating pads. Our kids can run a mock in the house I won’t care because I’ll be too high to give a hoot. Hey! Here’s another idea: Come while kids are in school, that way you won’t hear the kids running around either.
To Whom It May Concern 