Seeing an invisible illness

I’ve heard “you don’t look sick” so many times; overused the phrase “invisible illness;” my personal motto for dealing with lupus day in and day out is “fake it till you make it.” But, it’s getting harder to fake it, harder to hide the fact that I have lupus.

I consider myself lucky to not have a bad case of the lupus butterfly rash, or skin lesions like many lupus patients suffer from. My hair is not falling like many of the lupus patients who are on chemotherapy as an immunosuppressive treatment. I’m not on mass amounts of steroids causing weight gain and bloating.

But, I see lupus every day. I see how tired my eyes look, how dry my skin is, how yellow it can look from my liver involvement, how messy my hair is, how bland and sick I am. Even though I’ve had this disease for ten years, it’s getting harder and harder to look at myself in the mirror every day. Every day before leaving the house I fight back tears, sometimes more successfully than others.

This weekend was packed full of social activities with family and friends. May I remind you that I live in the south where young women really do put hours into their appearance and really look like the women you re-blog on Tumblr and pin on Pinterest. Their hair is always curled just perfect, their skin is flawless, their outfit always put together, heels to the sky.

Don’t try to tell me it’s just the magazines. In Atlanta/Athens it’s real life. Women are perfectly put together every day. I like looking my best, doesn’t everyone? But, I can’t keep up.

I’ve tried to keep up. This weekend I gave myself four hours to get ready for a party. Four hours to shower, dry and curl my hair, and put on my makeup. Why four hours? Because I have these spoons you see, there’s only so much energy I can expend. I can only hold my arms above my head so long; my neck can only hold the weight of curlers so long; no amount of moisturizer can fix my skin instantly; no product can really take away my tired eyes.

I wish this stress of looking nice only occurred when I had a social function to attend, but it’s every day. Women come to work looking like this. I come to work in jeans, slipping into my Ugg moccasins under my desk to keep the Raynauds at bay. I dry and straighten my frizzy hair once a week as I don’t have the energy to do it every morning and extra sleep is precious. When I have a client meeting I try a little harder, like I do when I have a social event.

Honestly, trying makes it worse, more stressful. I’ve tried so hard and still failed, half-assed it because I got too tired to finish the job. I stare at myself and ask “why do I try?” because trying doesn’t make it better. My hair is still a mess, my eyes still tired (and now red from crying), my skin still dry and yellow. Looking at myself is too hard.

I’ve become more self conscious lately, which is strange considering I was on television and it was part of my job to look the part every day. Sean can tell me “you look pretty” before we leave the house but it doesn’t help. Nothing seems to help right now. Do I keep trying, only to mentally break down? Or do I avoid trying (and mirrors)? I wish I had the money to pay someone to do my hair and makeup for me everyday (I know every girl dreams that) but that’s not realistic. I’m just not sure how to fake feeling good when I don’t look good.

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