An edited and much less sarcastic version of this essay was published last year on xoJane. You can find it here: http://www.xojane.com/issues/chronic-illness-isnt-made-up

Yesterday was Rare Disease Day so I spent a lot of time reading stories and watching videos by people who were diagnosed with rare diseases. Across the board, most people had something in common: it took YEARS to get their diagnosis. Years of being disbelieved by doctors, of being told there’s simply nothing wrong with them. Years of pain being reduced to a cry for attention. So I thought this would be a good time to share this essay that I wrote for those out there who are still fighting for a diagnosis. 


I bet a lot of people think that being diagnosed with an autoimmune disease is a fairly straightforward process. Presumably a person gets sick, they go to their doctor and then they’re handed a diagnosis. They are told which colour ribbon to wear on their lapel and which celebrity ambassadors they can call their own. They’re given some prescriptions and then whisked out the door to head home and make their way through the 5 stages of grief. Of course I’m glossing over the heartache involved, but that is how it works for some people with chronic illnesses. It’s sometimes as simple as finding out you have an incurable disease can get. But I’m not talking about those people in this story. I want to swing that lamp around and shine a big spotlight on the millions of people out there suffering tremendously with no sign of a diagnosis anywhere.

A diagnosis means acceptance, support, awareness, and most importantly the right prescriptions and therapies to treat a disease. It can get incredibly messy for people with symptoms indicative of diseases like lupus, multiple sclerosis, rheumatoid or psoriatic arthritis, ehlers-danlos syndrome and lyme disease to name just a few. Lots of these symptoms mimic other diseases and it can turn into a painful trial and error that spans anywhere from a few months to a few decades. Sometimes you’ll figure out which disease it is based on an assembly line of needles or scans, and sometimes those tests won’t be able to help at all. On average it can take 6-7 years to be diagnosed with a disease like lupus, but some people go their entire lives not knowing the cause of their ailments.

Having a chronic illness like lupus is terrible. I refuse to downplay it or sugar coat it by telling you that it’s challenging but also a blessing because it has taught me what really matters in life. Blah blah blah. No, lupus is plain awful. It affects your entire body and turns your life into one giant, sadistic guessing game. Something triggers your immune system, turning it into Jigsaw from the Saw horror movie franchise and then forces you to solve a series of complex mental and physical challenges in order for you to stay alive. And even if you’re adaptable enough to walk away from the game with your life, you’re still left with the scars of having gone through that. Also you just never know when Jigsaw will pop his freaky little clown-doll head back into your world and force you to go through it all over again with new and even more sinister challenges. And while that’s very harrowing, it’s certainly better than the alternative.

What is the alternative, you may ask? I’m talking about having all the symptoms of a disease like lupus but not being given the diagnosis. You get the same limp, same lung problems, same pain, but you’re not handed a corresponding awareness colour and you sure as hell don’t get a celebrity ambassador. You’re relegated to the corner where you have to sit uncomfortably and be neither seen nor heard.  You get to be traumatized by a freaky ass clown-doll that looks and acts just like Jigsaw but you didn’t get copyright approval so you have to call him “a clown-like puzzler.” You don’t get the disability insurance or a legitimate reason for missing that day of work. You get awkward shrugs, remarks like “you’re just not trying hard enough to feel better” and maybe even hate mail because you’re a ‘faker.’ You can’t sit with the lupus crowd and get your hair braided by Selena Gomez. That seat is taken, sorry. You also can’t sit with the healthy crowd and learn about the newest vegan-gluten-free-organic pie recipe from Gwyneth Paltrow. Your subscription to Goop has been cancelled. There’s just no room for you.

And that’s exactly how it feels when you’re really sick but the doctors are either too clueless or too overworked to run the gamut of tests that can tell them why you’re so sick. There is no national awareness day for “Unnamed Illness that I Swear I’m Not Making Up.” You can’t buy a t-shirt that says you’re a warrior battling “Something, I Promise It’s Actually Something.” If you’re like me you were raised to believe you are a unique snowflake and no one can label you. But as soon as you get sick and keep leaving the clinic with more questions than answers you quickly change your tune. You want to shout from the rooftops “LABEL ME! PIGEON HOLE ME! JUST TELL ME WHO I AM ALREADY!”

Not having that label is the loneliest feeling in the world. It’s like you’re stuck in a tween remake of Groundhog Day written by John Green. It is like repeatedly being kicked when you’re down. And instead of anyone having sympathy for you, they usually just feel so awkward about the whole thing that they decide it’s easier to berate you and blame it all on you. People ask you what’s wrong with you and when you try telling them they just shrug and say “oh,” or “it’s all in your head, have you tried antidepressants?” (Let’s point out that those people are also downplaying depression, which makes them jerks). And the worst part of that is that you start believing these assholes. You look in the mirror and see someone who is probably just chronically lazy. Maybe you really do have this unrecognizable chronic illness because you ate that one big mac when you knew it wasn’t real food. Maybe your immune system is only failing you because you want to be sick. Who knows, perhaps that emergency room doctor was spot on when he said you just like the attention. Just admit it, you get a bit of a thrill from spending 12 consecutive hours in that hard plastic chair in the emergency room just waiting to be told there’s nothing wrong with you. Oh wait, no. No, that’s not true. They are just assholes. And you are sick.

I wish I didn’t have to keep writing essays like this. I wish we could all be laughing at how hard it is to relate to what I’m saying because of course no one would want to feel as persecuted as people with undiagnosed illnesses are made to feel. You don’t just get bored one day and decide to willingly sign up for a witch trial. But unfortunately if you have a chronic illness you’re probably nodding your head, relating 100% to these words because there is enough stigma attached to your medical records that you could actually drown in it. And the reason you can relate to these words is because even doctors can get it wrong. It’s so hard to compete with someone we hold to such high esteem as a society. It’s so hard to look at someone who literally has the power to let you live or die and tell them they’re wrong, they’re probably sexist, they’re just not trying hard enough, they lack empathy and see you as a statistic from a report instead of a living, breathing human being. Some doctors are amazing, nurturing human beings. But some doctors seem to forget that medicine isn’t always black or white.

Having an invisible illness like lupus or MS is hard. Even with hundreds of celebrity interviews, black tie galas, and popular national awareness campaigns, we are often misunderstood and discredited amongst our peers. Imagine how magnified that unwarranted shame must feel when your illness is so invisible that even the doctors can’t see it.

People who are chronically ill but haven’t received a diagnosis deserve the same care and compassion as those of us who were lucky enough to find our ribbon colour. We need this awareness to find us a cure. They need the awareness to find them a disease so they can finally get some answers.  I was one of those people for almost 8 years of my life and it was rough. I won’t sit here and pretend that there isn’t some lingering psychological trauma that builds up inside of you when you spend that many years of your life wondering what you are doing wrong and if maybe it actually is all your fault. I was tossed back and forth between doctors and diagnoses. I had no clue where to turn because I didn’t know what disease I should be googling for support groups. I thought that no one would really understand what I was going through. And then when I started trying to articulate what was happening to me I realized that I wasn’t alone. It was hard to find articles and essays written by people like me, people who existed alongside of me in limbo. But, when I stumbled across those special few stories I clung to them and found support. I wasn’t the only one stuck in the in-between. And when I finally met a doctor who gave a damn and took the time to figure out why my immune system was being such a diva I was so relieved that I wanted to give her the biggest high five ever. The fact that you want to high five the doctor who tells you that you have lupus is a sure sign that not knowing is the hardest part of being sick.

We can probably change that though. Not knowing will never be easy but if we talk about the demons that lurk in that shadowy corner more often I bet we can ease the pain and confusion just a little bit. So let’s do it. Let’s tell our stories before they have a title. We shouldn’t feel like we have to wait for that confirmed diagnosis before we hit the publish button. So what if we don’t know how to tag our posts? We need a narrative for this messy chaos that exists between healthy and diagnosed illness.  And we really need to actually listen to people when they feel like it’s the right time to tell us their stories. As a community we have to do a better job of telling sick people that we believe they are sick.

You – yes, you, over there in the corner. I’m talking to you. Even though your blood work came back negative and there was nothing alarming in your scans that doesn’t mean it’s all in your head. Find another doctor. Demand a different test. Don’t listen to your great aunt who thinks you’re just a hypochondriac. Keep fighting. And if you find out you’re on Team Gomez give me a shout, I’ll save you a seat.

8 Comments on You’re Not Making Up Your Chronic Illness

  1. Marlies Vonn
    March 1, 2017 at 4:25 pm (9 months ago)

    Thank you so much for writing this. You were the inspiration behind the start of my blog and it has been one of the best things I’ve ever done.
    I still don’t have a diagnosis. Thank you for remembering us. Maybe our ribbon should be clear plastic?

    Reply
  2. Sorcha
    March 1, 2017 at 9:39 pm (9 months ago)

    I spent so long being told nothing was wrong with me and being offered counselling and antidepressants that sometimes I can’t believe I finally found out what was wrong and got a diagnosis. It’s incredible what a difference it makes even when it’s something that has no cure.

    Reply
  3. Sheryl
    March 2, 2017 at 4:13 am (9 months ago)

    Love your wicked humour, which serves to highlight the problem better than normal 😉 looking forward to your next piece!

    Reply
  4. Lesley
    March 3, 2017 at 6:46 am (9 months ago)

    Brilliant! I love your ascorbic humour …. the thing is, when you start to question your own sanity because of all the blank stares from doctors , an article like this is just what is needed. Thank you for making me lol … I know that there are many more out there laughing with us. Keep writing Lisa… you are a blessing!X

    Reply
  5. Laci
    March 3, 2017 at 10:19 pm (9 months ago)

    Thank you for remembering us. 5 years and counting in the land of undiagnosed. I appreciate this blog more than I can express. You are truly a blessing <3

    Reply
  6. Tania
    March 4, 2017 at 8:09 am (9 months ago)

    I really needed to read this today, thank you. You’ve put into word things that I’ve been feeling for a very long time, but haven’t been able to articulate. Particularly the trauma of being told “It’s all in your head” and “you’re making it up for attention” for such a long time. It took 10 years for my basilar type migraine to be diagnosed and 10 years for my hEDS diagnosis. When my first tilt table test came back negative, the doctor went down the route of anxiety, when actually I have PoTS – identified on a second (correctly performed) tilt table test. I had to fight for my symptoms to be taken seriously, until the first consultant listened to my heart “because you’re here” and heard my tachycardia. So it’s not surprising that my fear when I went to pick up my gastro test results earlier this week weren’t about what was wrong with me, but rather whether the test results showed what was wrong with me and if I would have another fight on my hands. Xx

    Tania | When Tania Talks

    Reply
  7. Gabe
    March 22, 2017 at 8:41 am (9 months ago)

    This article gave me life. I’m another undiagnosed spoonie who just keeps adjusting to my body functioning less and less the way I’m used to because I don’t have access to health care, and talking about my illness always feels slippery because at some point someone might ask what, specifically, my disabilities are caused by and when I say “I don’t know,” that will be the end of being taken seriously for a lot of people. I made a post after a doctor I saw early on refused to listen to me describe my symptoms, telling me that all that mattered was what she could physically see, that said “If the doctors can’t find anything wrong with me, does that mean nothing is? If nothing is wrong with me, does that mean I can just get up and walk?” It’s like I’ve spent years waiting for permission to be sick.

    Reply
  8. Lou
    March 27, 2017 at 2:20 am (9 months ago)

    I’m 25, I had an emergency cholecystectomy three years ago, and I’ve been sick with an undiagnosed illness since — so much for the 3 month recovery, eh? This article didn’t make me laugh so much as it made me cry; I live in an abusive household, so I’m reminded nearly every day, sometimes violently, that I’m not really sick. The doctors haven’t figured it the fuck out yet, so, due to the nature of my condition, I’ve been rendered housebound and totally dependent on my unstable family. My mom’s been sick for about a week, so my dad pulls me aside (meaning: out of bed and away from relative contentment) for a conversation. He tells me for 30-45 minutes that “what I’m doing” is KILLING my mother… what? The fuck? What I’m doing… is waking up sick, spending my day sick, shivering in pain, wiping tears from under my chin, thinking of change and beginnings and endings and relief, finding morbid comfort in the act of suicide, and going to sleep every night, hurting hurting hurting, realizing what a sad, dangerous state of mind I’ve arrived at. Then, suddenly, I realize the feeling gripping my neck is terror . I’m afraid for my life. With that, sleep evades me. I find myself awake for days, but when I finally do drift off, I dwell in an abyss offering nothing but torment; sometimes when I wrench myself from sleep I force myself to sit up, stay awake, and forget the goddamn dream. Think think think listen to music watch TV anything, anything, I’m okay. I’m okay. And it’s gone. I’m awake, sick, and now it’s another day. I’m still sick, I don’t know why, and my condition, which I just need to tighten up my bootstraps and get over (silly, immature girl), is killing my mother.

    But I’m not done. This isn’t as good as it gets. I simply don’t accept that. I’m fighting. I’m going to figure this out. I will find the right doctor at the right time. I will get diagnosed and treated. I’ll get away. Go back to therapy. I’ll live my damn life.

    What I won’t do? Be a whipping post for a cruel old man, maybe anxious about his wife, money, work — any excuse.

    Not anymore.

    Anywho. Uh. These articles genuinely help. They’re… validation, really. So, thank you. <3

    Reply

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