It’s no secret that I love books. 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. I love when something can poke fun at itself, so right away I was drawn to the advice in this book. While reading “This is How” I felt like I was reading my own story and it was a very therapeutic exercise. 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? I knew the undiagnosed deserved to see a hundred variations of our story on a shelf, but those books remained unprinted.

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. They certainly don’t want to think about the fact that it could just as easily happen to them. Imagine if you’re healthy and relatively carefree, and then out of nowhere you wake up one morning jolted by pain. And then that one morning turns into one week, then one month, then one year… Eventually 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 start to 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.

That is the reality for over 100 million people in the United States alone. For most of them it takes almost a decade of days like that before they are given any answers. For some, those answers never come.

“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 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. I wish you could go to a bookstore and find an entire section of books written for you. 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.

14 Comments on To Those Of You Waiting for a Diagnosis

  1. Julie
    September 15, 2016 at 2:51 am (6 years ago)

    I can’t thank you enough.

  2. Kami
    September 16, 2016 at 4:36 pm (6 years ago)

    I remember the waiting period so well. Wondering what the heck was going on inside me. Knowing things were not good. Then after being misdiagnosed I felt so cheated, all that time thinking I had found the answer when the real disease was progressing and waiting to be found.

    I so appreciate you writing this, because even though I have found at least one of my answers/diagnoses…I know how valuable this post is and will be to others in their own heartache of waiting. Hoping for light to be shed, a semblance of solace to come in the words “we now know what you have.” So for that, thank you. Sending love your way, Lisa. <3

  3. Andrea
    September 16, 2016 at 7:02 pm (6 years ago)

    This means so much to me! Thank you! I am still waiting for a proper diagnosis… It is terribly hard.

  4. April
    September 19, 2016 at 1:23 am (6 years ago)

    I cried most of the way through this. I felt like you read my mind and gave me a voice. I read this to my husband and told him this is me. He now understands me more. So THANK YOU!!!!!!

  5. Joanne
    September 20, 2016 at 3:59 pm (6 years ago)

    This really meant a lot to me! I could relate to every single word in this and it made me cry, its refreshing to remember you are not the only one who feels like this and helps make you feel slightly less lonely!

  6. C.P.
    October 5, 2016 at 10:44 pm (6 years ago)

    Oh wow! I just bawled most of the way through this. Thank you for writing this! My friend just sent me the link, and it is so powerful. It feels like an article I’ve been waiting to read for years! I definitely relate to feeling like you don’t have the energy to prove your case to others but you have to keep doing it – but I’m lucky that I have good doctors that do know there is something wrong, they just can’t pinpoint it so at least I barely ever get that feeling from the doctors, but I get it more than enough from others who don’t understand you can’t tell how someone lives by looking at them. I’ve been pining for a diagnosis for so many years, I totally agree with the notion that it will be the beginning rather than the end!!! Thank you so much for your insightful, supportive and wonderful words!!! <3

  7. TS
    October 16, 2016 at 5:32 pm (6 years ago)

    Thank you for writing this story!! It’s the exact way that I feel and haven’t ever been able to explain or describe it as well as you did. I’m one of those still waiting and fighting just to be diagnosed. I’m going through the same struggle that you did. Dr visit after dr visit and different results from every specialist that I’m referred to and still it seems to them that it’s all in my head or just made up. I’m feeling terrible today and I stumbled across your story by reading up on my symptoms AGAIN!! As I began to read I began to cry and continued to the entire time I read it but now somehow it made me feel a little better because now I can share your story with my family and friends and maybe all of my doctors when they ask me what’s wrong or what are your symptoms? I appreciate you taking the time to write and share your story with people like me so that we can finally say I’m not crazy, and I’m not alone!! The courage you have had throughout
    your journey to keep fighting until you finally got a diagnosis is inspirational and I hope that I will have the same to keep fighting for answers as well. God Bless and good luck to not only you but to everyone fighting this exact same battle. Thank you once again!!!

  8. Brittany
    October 19, 2016 at 1:13 pm (6 years ago)

    I made the mistake of reading this post while I’m in class because frankly, it made my eyes well up with tears. I’ve been dealing with the struggle of “diagnosis limbo” for almost 8 years. My blood tests say one thing, a doctor sees another. “Your ANA levels are substantially high, but they fluctuate from really high to sort of high, so we’re not really sure if there’s anything wrong with you.” How does that statement even make any sense? Or my favorite at my latest rheumatology appointment (of which I’m searching for a new doctor because I moved to a new state for school), “There’s nothing wrong. You’re just in pain and tired because you’re stressed.” Sorry, but I didn’t come see you for you to give me a new diagnosis – I’ve already been given one after waiting 7 years for someone to give me an answer. I decide to see a different rheumatologist in my new city who takes one look at me and says, “Pshh. You don’t have lupus! You have psoriatic arthritis.” I look all over my body – trying to find any traces of psoriasis – but there aren’t any; this doctor just spit this at me with nothing to back it up with – no tests, no nothing. Like you said, “…you sit there and take the abuse and you get up and do it all over again.” Thank you so much for writing this because I can’t seem to get my thoughts about my lupus out into words. What you’ve said is exactly, to the finest point, how I feel in every way. I just wish more people, especially doctors who claim they know what’s best, would understand how we feel.

  9. shoshana
    October 23, 2016 at 6:14 pm (6 years ago)

    thank you with all my heart…

  10. Vanessa
    October 31, 2016 at 6:49 pm (6 years ago)

    Thank you for writing this, I cried almost all of the way through. Even knowing you’re not in limbo alone offers a great deal of comfort x

  11. Nicole
    July 8, 2018 at 4:54 pm (4 years ago)

    Thank you so much for this post. I bookmarked it years ago and came across it now at a perfect time. Going in to see a new gastroenterologist, the first one refused to do a colonoscopy, did only an endoscopy and decided the problem was “cannabis hyperemesis” although I began smoking as a result of my illness, not the other way around. In addition the nausea and vomiting went awaywith dietary changes and the help of a registered dietitian, however because this doctor brought this up almost every specialist I’ve seen since has refused to listen or look further, one even told me point blank that I was wasting his time. I know I need to keep pushing forward but being told so many times that I’m “too young” or “get out I’m not giving you drugs” I start to believe it. Before I knew I was really sick I was involuntarily checked into a psychiatric hospital and given all kinds of meds because my old MD figured I was “too young” and therefore must just be crazy. I know I’m not, I know my body. I’m always afraid to get tests done and hear they came back normal.

  12. Mac
    October 18, 2018 at 10:08 pm (4 years ago)

    I am a male in his late 40’s, with symptoms that just don’t make any sense at all. I have already had many diagnoses, and as things have progressed every single one has been discarded as some symptoms have diss-appeared and new ones have arrived. I long for the day I get a diagnosis, and at this stage I don’t really care what it may be. Limbo is crushing. Thank you for your words – just knowing I am not alone here helps, and the right words can last forever.

  13. Roberta
    March 24, 2019 at 9:34 pm (4 years ago)

    Thank you so much for this❤️


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