The hardest part of lupus was not knowing what it was

I’ve always turned to reading as a way to escape reality during the dark days when I wanted to take my mind off of my illness. But I’ve also turned to reading as a way to approach reality head on and try to come to a better understanding of my physical health and mental wellbeing. Recently I’ve been reading This is How: Help for the Self by Augusten Burroughs to help me make sense of my life with lupus. It’s one of those self-help books for people who don’t like self-help books. But then I read his chapter titled “How to be Sick” and it broke my heart, because his advice about coping with sickness is written solely for people who get diagnosed with an illness.

Reading that chapter takes me back to all of those long years before my lupus diagnosis when I knew for sure there was something really bad happening inside of me but no one could tell me what it was. I felt like I couldn’t mourn the way you get to mourn when you’re diagnosed with something. I felt like I couldn’t turn to people for support the same way others could. Which support group should I seek help from when I don’t know which disease it is? I would often find myself at a bookstore staring at the health and self-help section blankly, wondering if someday there would be a place for me on the shelf, aching to be able to pick up a book that was written for me. I lingered in some somber purgatory. And I stayed there for years, tossed around by doctors, misdiagnoses, questioning glances and awkward shrugs. I kept wondering how something so agonizing could be omitted from self-help books. Shouldn’t there be a how-to guide on how to manage the absurdity of it all?

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Augusten Burroughs writes “The first thing you understand is that when something is new the novelty or newness itself carries weight. This makes the message weigh more. Bad news is even worse when you are first told of it. The diagnosis will never be as terrifying as it is the first day it is given to you.”

But that advice isn’t universal because for some people that day never comes. Or at least it feels like that day will never come. They know they are sick. They know their bodies and they know something isn’t right anymore. One day they wake up and their normal is gone, replaced with a deep ache they don’t recognize. Or slowly, over the course of a few months or years, that feeling that they know as normal will become distant, and that deep ache will creep in so gradually that they won’t notice at first. They’ll think it’s a virus, food poisoning or something simple like a pinched nerve that will un-pinch itself soon enough. But the normal doesn’t ever come back. And even though they know something inside of them has veered off track, doctors dismiss them. If they don’t see proof right away they are waved out of clinics and told to go home.

For those people, they never get to experience the dread of the diagnosis. And that’s probably the worst thing of all, if you think about it. Because at least when the diagnosis happens, as harrowing and violent a shift it is, you’re given the time and the resources to comprehend that disaster and you’re given the proper encouragement to heal. Being sick without a diagnosis is like driving a car and seeing a transport truck coming right for you. You grip the wheel in anticipation of the horrific crash, but it never comes. You just get stuck in this loop of fear and impending disaster. You can’t attempt to recover from the crash until the crash happens. It’s that simple. The thing needs to shatter before you can pick up the broken pieces.

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And then to just pile more bricks onto your heavy, aching shoulders, people start telling you that you’re making it all up. It’s in your head. You deliberately veered into oncoming traffic. You must have wanted to live like this. It’s nothing. It’s always nothing; a want for attention is all.

I think it comes down to a lack of empathy. Not enough people stop to imagine that person as their sister, mother, uncle, or friend. They certainly don’t want to think about the fact that it could just as easily happen to them.

“Once you’re in it, it’s okay,” Burroughs says of a diagnosis.

To feel like I am privileged because I was diagnosed with lupus is absurd, but it’s honestly how I feel. I’m one of the lucky ones, I always think, when I read comments on my blog written by people who just want to know why. I just wish they could find a doctor who will listen to them and see them as a person with hopes and dreams.

I guess what I’m really getting at is this: I understand. If you are that person I am writing about, know that I believe you. Don’t second-guess your instincts. Don’t listen to the people who tell you “but you don’t look sick.” I know you are sick. I know you don’t want to be sick. I understand that what you are going through is really hard, and it’s amazing really that you haven’t given up or fallen into a million pieces. And even if you did I wouldn’t blame you, because this is a battle that you shouldn’t have to fight. You should only have to fight against your disease. You shouldn’t have to spend all of your energy battling disbelieving doctors. You shouldn’t have to scream for help. You are important. You deserve answers and I really hope that you get them someday. But even if you remain undiagnosed, you are still one of the sick ones. You are as much a part of this community as someone with a diagnosis.

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If you’re searching and need something to hold onto while you’re stuck in this limbo, please pick up a copy of Furiously Happy by Jenny Lawson, she will give you the support and community you need when you’re struggling. It’s not a hundred different books to choose from but it’s one very special one with lots of heart and encouragement.

And just know this: If the day comes when you are diagnosed it will not feel like the beginning of your death; it will feel like the beginning of a hopeful new chapter.

You are strong. You are believed. You belong here.

This post was originally published on The Mighty and BlogHer.


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