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This is long but it is something I probably would have wanted to hear when I was an undiagnosed spoonie. 

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. And he is essentially a magician because it feels like magic when he puts into words everything I’m feeling. But then I read his chapter titled “How to be Sick” and it broke my heart, because that chapter is written for people who get diagnosed with an illness. It reminds me of all of those 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 non-profit charity 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/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, paralyzing purgatory. And I stayed there for years, tossed around by doctors, misdiagnoses, questioning glances and awkward shrugs. Should something that agonizing be omitted from self-help books? There simply needs to be more support for the undiagnosed. They deserve to see their story on a shelf. 

Augusten Burroughs writes “the day of your diagnosis will seem like the end of your life and the beginning of your death. Now, instead of a future when you contemplate what’s next, you will see only a large gray CAT scan machine blocking your view of the terrifying unknown behind it. 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. For years they feel a certain way and they interpret that way to be what normal is, and then one day they wake up and all of a sudden that 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 causes inside of you, you’re given the time and the resources to comprehend that disaster and you’re given the proper encouragement to heal. Someone will cover you in a blanket, offer you some hot tea and tell you that someday it will be okay, at least now you know what it is, the worst has already happened, you can figure out how to go on.

It’s really tragic that there are so many people out there just wishing for that. 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 keep staring at the headlights and want for it to be over so you can either die or learn to walk again or something, anything, to move forward. 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.

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. So let’s do that. Imagine you know this person really well. Or better yet, imagine that you are the sick one. You wake up every morning jolted by the pain and the frustration. You try with all of your might to remember what it was like before, to just spring out of bed and run downstairs to put on the coffee pot, to go for a jog before breakfast, to button up your shirt and head out to work. You forget what it’s like to not look in the mirror and feel like a failure or a stranger or a burden on your family. But instead of going for a jog, grabbing a quick shower and heading to the office, you fumble with your jeans button and painfully pull on some socks and go back to the doctor to wait for two hours just to be told your blood work came back fine, maybe you are depressed. Maybe the crushing back pain is just stress. Maybe you can’t turn your head to the side without blacking out because you don’t want to be able to turn your head to the side without blacking out. And you sit there and take the abuse and you get up and do it all over again. You do it all over again because you know the difference. You know that you used to be able to turn your head to kiss your boyfriend at the movies. You know the only backaches you ever felt were after long games of soccer with friends. You know you are happy, more or less, at least as happy as someone can be when they are this sick and nobody believes them. You know you spend most of your time trying to hide all of the pain, sickness and hurt, so how can it be a bid for attention? And if you were depressed and stressed that would be okay. You know mental illness has physical manifestations and that is just as real and painful. But that’s not what this is. You know your body.

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

But these people never really get in it, do they? That’s a pleasure they never really get to have. And that’s heartbreaking, if you ask me. To feel like I am privileged to have been diagnosed with lupus is absurd, but it’s 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 answers. 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. And 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.