Month: November 2017

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.

I wonder who I am? I’m a woman. I get told I can be anything I want. I can achieve anything I want. However, who am I if I’m not in control of my body? Who am I if I’m not in control of the prying eyes and lurking hands? I look up and everywhere I see is those dirty looks, and intentions that go with it. It leaves me wondering what would be my fait if only few of them found me alone somewhere where I couldn’t call for help.

Don’t think I have not been in that situation once or twice before. I knew how to get out of it. Even their smiling faces scare me now. Smile back really quick and move on. That’s how it works right? You don’t want to get noticed by not smiling. Or by “being rude”. You don’t want to be THAT gutsy girl or woman who knows or thinks too much. That one is sure to get comments or more looks.

I want to apologize to the good ones out there in advance because it seems like an attack on all men, but it’s not. As women, we would not survive in the world without your help. It’s high time we admit that. We are too quick to judge and point a finger. It’s also important to acknowledge, and thank them because those are the ones who make the world go round for us whether we want to admit it or not. There are places in some parts of the world I don’t want to go without the men of my family. I walk right behind them. If you know me even a tiny little bit you know I’m not the type to walk behind anyone. And they are kind enough to let me walk behind them because they know that this is just for my comfort not to fulfill some need they have, no matter how it might look.

I’ve been told not to write about this topic because the blame would probably fall on me. I am a woman after all? Was I alone when these men were ogling me? What was I wearing when I got offered the bottle of water that I didn’t ask for? Some of the people tell me this “for my own good”. We have heard it all before. What I’m trying to say here is not the same thing what we’ve all said over and over again. What I’m trying to say is that I’m not JUST a woman, I’m a MUSLIM WOMAN. I’m the one you see with a headscarf. You assume men don’t mess with me. People see this scarf on our heads or a long dress and think that we are a different species. That we don’t have the same problems. No one would harras us. No guy would dare look in our direction. As I sit here alone and write this, my friends, you have no idea how many eyes are on me. Am I the most beautiful thing in the room? Uh, I could show you a lamp or two that are more attractive and are not wearing a head covering. Jokes aside, we’re all facing this. We get asked the same questions. Those of us who don’t wear an abaya are told, “well, maybe if you wore your clothes differently”. Those of us who work are told, “Maybe if you stayed home”.

What about that man? That guy whose eyes lingered too long in the wrong place? What about that guy who kept telling me “I was too pretty to be out by myself.” No, nothing on him. It was all me. I should have known better. I was in the wrong place at the wrong time. I should have done things differently. As I write this my fingers shake because there are so many examples I’m afraid to write down that get too personal. What’s more I know that I’m about to be told “but why would you compare these examples to people who have actually been assaulted? This is not real assault?” And these words will come from folks near and dear to me.

I shake because no one will say good on you for speaking out for Muslim women, for talking about the “everyday ness” of this crazy thing.

You don’t have to be touched and caressed to feel assaulted, not always. Sometimes just a look, just a word or a phrase can do the job just fine. It can break you. And people who are supposed to support you and stand by you break you even more by looking you up and down and asking “what are you wearing?” Or “Men will be men, you need to be just a little more careful.”