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I Wasn't Prepared for the Ways Chronic Illness Changed My Body

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A year ago I had an incredible opportunity to be interviewed and photographed. It taught me about who I thought I was and who I want to be. What a humbling and needed experience.

It’s a Friday in January and it’s cold outside. I woke up to a whole 7 degrees. My hip is howling, feels like an infected tooth and my hands are claws that refuse to obey my asks. It’s 8:23 a.m. and I am unbelievably tired. Did I sleep? I blinked and thought sleep found me. My body tells me this is a lie.

I have plans today. Lots of plans. But first, let’s get off this couch. I’ve been sleeping on the couch because my handsome husband snores and I cannot sleep through it. This couch kinda sucks, but at least I can get some sleep on it.

Today a talented photographer is coming to take pictures of me and my little dude. This is for a short essay I wrote for RA Health Central. I talked about the side effects of having a chronic illness the docs don’t tell you about. I’m so excited. Pretty cool, right?

I have a list of things to do before she gets here at noon. The first thing is to move this tired old body.

I manage to drag myself out of the crevices of this couch and start to clean after shoving a handful of meds into my face.

With the house and the kiddo ready I slap some makeup on. I’m not doing too bad. I actually manage to get ready before the photographer showed up. Good job kid.

Sophie, the photographer, shows up and she is incredibly cute. Blonde, gorgeous skin and sporting MAC’s Russian Red on her lips. She is cool, effortlessly beautiful as well as professional. She makes me smile. To be 20-something again. Sigh.

We take some photos in my living room, outside and at a local bookstore. Sophie shows me a few of the frames. I am shocked.

I look old. I am 39. I am not blind to the silver threads weaving their way through my black hair (which I love) or the laugh lines around my mouth. But this… I don’t recognize myself. It hurts. I am ashamed, sad and taken aback. Who the hell is this lady with the shaggy mom haircut? Who is this lady with the loose cheeks, sharp cheekbones and angry forehead? It’s me and I hate it. There is no softness in my face. I am all hard angles.

Sophie turns the camera towards me and says, “Look at how cute this is!” I think who is that woman? I want to cry. RA has walked all over my face. The pain has left its mark on my face. This is how the world sees me. I want to hide. My face is pinched because I am in pain in this photo. My face is always pinched because I am always in pain.

Why does this matter so much to me? Maybe because it is proof my RA is taxing. It is so taxing I cannot smile normally without feeling weird. I cannot really laugh without my face asking me behind the scenes, “girl, what are doing?”

I am not looking for compliments or pity. This is a confession of vanity and insecurity. I’m underweight now when I used to be curvy, healthy with lots of shiny jet black hair and beautiful skin. My RA is now running this show. My face is littered with acne, purple veins and bruises under my eyes. A smooth forehead is replaced with a scowl line between my eyebrows, and my eyebrows are painted in because they fall out. I am sallow and tired. My pain, my fatigue is on display. My face no longer knows how to be soft. This makes me so damn sad. There is not one part of my body RA has left untouched.

I am getting older. I am also getting harder. Pain does that to you. It erases the soft lines from your face. It creates angles where there were none. I was not ready for this.

I was not prepared for losing my body and my hair while feeling completely miserable. I was not prepared for the grief of losing my physical sense of a healthy me to be so complete. I was not prepared to look at a photo of myself and see a stranger. You don’t realize how much you avoid the mirror when you are unwell until someone takes a picture and shows you. First world problems, right?

I remind myself that the only constant in this world is change. My body will wane and wax with my RA.

I will adjust. Yes, beauty is only skin deep. I do embrace and understand this. I also know on the day you look at yourself in the mirror and have no idea who you are looking at, it does something to you. You may think you’re secure in who you are physically until one day you’re not. You may think you’re solid enough that this won’t phase you, yet it does. You tell yourself these feelings are shallow. There’s people out there who are in darker places then this. Still here you are, pity party central. I was ashamed of myself and my feelings, and deeply disappointed in my reaction.

It makes you question everything you thought you knew about yourself. It makes you feel small, insecure, silly and oh so vain. So you put in more work. Work to come terms with your disease all over again. Work to love the shell you’re in even though you feel like this home is no longer yours.

This is a normal reaction to the loss of control over your whole body. This is grief and you do not get to choose how it manifests itself.

I am evolving. My standards of beauty and confidence are too. My disease is at its peak and there are repercussions to that. I don’t have to like it. I don’t like it. But in order to stay healthy I must accept it. My body is fighting an internal war. You adjust and gain perspective. Clarity and gratitude come in like rain, washing you, waking you up. You learn to love yourself a little more.

Reinventing my own idea of physical confidence is part of living and respecting myself. What’s a few lines and angles or hair?

Originally published: June 18, 2019
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