I’m a worrier. I worry about how clean my house is, I worry about all the books on my bookshelf that I haven’t read yet, I worry about whether or not I’m a good friend, I worry about what my third grade teacher thought of me. So as a blogger, naturally there are bloggery things that I worry about too. I worry if anything I write makes remotely any sense at all, and I worry about the things I choose to share from my life and how those things might be perceived by others. I put a lot out there for people to see, and a lot of that is really private and also kind of messy. The messiness is very intentional, but I still second guess myself at times.

The whole reason I embrace and exhibit the mess and the chaos of my life is because I want very badly to not be one of those bloggers who whitewashes everything and tries to curate her every day existence into this unobtainable, Clarendon filtered, just-out-of-reach perfection that makes everyone love me but also kind of hate me at the same time. As much as I would love to have more Instagram followers, that’s just not my style. And the main reason that isn’t my style, aside from my epic laziness, is because I think it’s really important not to romanticize life with a chronic illness. I don’t want my life with lupus to come across as some sort of adorable YA novel, or a steamy, angsty Nicholas Sparks book (are Nicholas Sparks books steamy? I know for sure they are angsty). Don’t even get me started on those Lurlene McDaniel books. Even I was guilty of reading those as a pre-teen and finding the illness stories super romantic. But I’ve grown up, I’ve learned what it is actually like to be sick, and I realize now how truly harmful all that crap can be to the chronically ill when everyone thinks our illnesses are glamorous and romantic. There are lots of people out there, whether they are authors, filmmakers, or bloggers, who either intentionally or by totally missing the point, do just that. And I reallllly don’t want to be one of them. But after falling down an internet rabbit hole last night, reading about books like Me Before You, and also reading about the romanticization of mental illness on websites like tumblr, I started to worry that I do in fact add to this really unfortunate discourse.

If you’re unsure what I mean by romanticizing illness, let’s take a look at The Fault in Our Stars. It’s a book about two teenagers who have cancer and fall in love. When that book and movie were released, young people were actually going around saying things like “I wish my boyfriend and I had cancer so we could have a cute story like that,” or they were trying to turn their iphone earbuds into fake breathing tubes because it was a trendy fashion statement. That’s a prime example of romanticizing an illness and making it seem desirable to be sick. I really liked the book, and could definitely relate on some levels to the main character. I think that John Green probably set out to humanize cancer for a world of people who don’t understand what it’s like to live with an illness, and that the big problem is in the fine line between humanizing something and romanticizing it.  But lots of people don’t think about that line, or notice it, so they look at the sentimentality, the love story, and don’t recognize the harder stuff that’s happening.

By Courtney Willett

And what am I doing as a blogger if not trying to humanize chronic illness, normalize the conversation, and make it something that people who are sick can relate to and people who are healthy can understand? So I walk that fine line too. I mean, it’s probably a little easier for me to stay true to the reality of an illness as I actually live with one, but I clearly still struggle with its portrayal sometimes.

I take it very seriously that I am in a position where people actually read my blog and find out about life with an illness. So I don’t want there to be any misconceptions, I don’t want anyone to read my posts and think “I’m totes jealous of her.” Yet there are times when I do hear people say that they are jealous of me. I am told way too often that I’m really lucky to be able to “simply” hang out in bed all day without having to go to work. Firstly, how very dare you. Do us all a favour and never say that to someone with a chronic illness. I actually find it super offensive because I hate spending most of my time in bed, and I actually love working and really wish I could be doing it. Secondively, I sort of am still working, and probably way more hours than lots of other people because I can promise you that being sick with several chronic illnesses and having to manage medications, appointments, therapies etc. is a full time job. So when I come across these “you’re so lucky,” and “I’m so jealous” comments it makes me really worried that I’m not portraying chronic illness properly, that I’m putting something out there in the universe that tells my readers that lupus, or ehlers-danlos syndrome, or gastroparesis, or any other type of serious chronic illness are things they should wish upon themselves because of the “perks.”

Want to know something way better than the perks of having lupus? Not having any lupus at all. Lupus suuuuuucks. But I think invisible illnesses are easily glamourized because you don’t necessarily notice the sickness or the pain right away. You don’t notice the chronic pain, you notice that I’m staying home in bed and watching Netflix. You don’t notice the non-stop barf-a-thons but you see that I’ve lost twenty pounds and look pretty okay in my jeans.

Sometimes I worry when I write positive things about having lupus, like how it has strengthened my relationships, if that’s me contributing to the romanticization of my disease. I’m in a good relationship but my illness wasn’t some maudlin plot device that was introduced to bring us closer together. Having a chronic illness has definitely put me in some situations where relationships are tested, and come out stronger because of it. But lupus has never once been the cause of those relationships being fanciful or easy. It’s hard work. I wonder if I should spend more time counter-acting all of that by mentioning the friendships that have been tested and didn’t really make it through the shit storm? Because those exist too. I have friendships that have faded away because I’m too tired to keep up with them or because I always have to cancel social outings last minute.

So I’m going to reiterate it here, BEING SICK IS NOT ROMANTIC. Nor is it poetic. My life is not a John Green novel or an episode of One Tree Hill. Having lupus does not mean my life is full of sweeping romantic gestures. It isn’t being in the hospital while your lover runs wildly down corridors to find your room so they can kiss you passionately and tell you that no matter what they will love you forever, oh baby, will they ever. It is not lots of crying and kissing in the rain while running your hands frantically through each other’s hair for whatever reason. It is not sitting in the passenger seat of a car with the top down while your hair blows in the wind and you get this look on your face like you’ve finally accepted everything that’s happening to you, and your significant other then parks the car and carries you down to the beach so you can have a picnic at sunset. It isn’t just sitting on your body pillow binge watching Netflix originals all day. I mean, it can be those things I guess. But I promise you it’s a lot of other, way grosser and more painful things too.

I’m sure it is possible for someone to write the story of their illness that way, or to capture it in just the right light using a toasty filter, and for others to see it and be like “omg that sounds awesome and romantic AF. I want lupus now. I bet The Weeknd takes such good care of Selena Gomez. Hashtag relationship goals.” I don’t really want to contribute to that. Sure, lots of sick people are really sexy, but BEING sick isn’t sexy. Just like lots of great things can happen in the lives of those who are sick, lots of romantic things even, but I don’t want to romanticize the act of being sick. I don’t want the disease to get any sort of positive reinforcement or recognition. If I had a bunch of crying and kissing in the rain sessions with Matthew I would immediately get pneumonia, and not whatever sexy kind of pneumonia you’d see in the movies, but the kind where you cough up a LOT of mucous.

Having a chronic illness is pretty much the opposite of romantic. Being sick every day is not something people should go “aww I want that” over. It isn’t something that people should aim for. Very few people look really attractive in hospital gowns. When you’re sick there are way more bodily fluids than you saw in A Walk to Remember or in that cute pre-check up hospital instagram story. Sometimes you barf on the floor. Your boyfriend doesn’t so much run down a hospital corridor to find you and then passionately kiss you as you’re dramatically wheeled into a room full of sexy doctors yelling “stat!” It’s more like he slowly walks down the musty halls playing his Nintendo DS, trips up in the buckets that are on the floor to collect all the ceiling leaks, he’s completely lost and thinking “well here we are again” and then goes to find a vending machine to get a can of coke so he can stay awake all night in the hard plastic chair next to your bed while you sleep off the morphine and wake up with bad breath and mascara somehow running from your forehead to your chin. If you drove around with the top down, the sun might accidentally touch your skin and then you’d get a severe rash and need to go to sleep for three days straight and then wake up with really greasy hair and you’d have to ask your boyfriend to sit outside the bathroom while you shower in case you’re so tired you fall over, but instead of him suggesting a sensual sponge bath he will tell you to just go back to bed, who cares if your hair is greasy, it’s not like the Queen is about to show up at your house. You’d love to have a picnic on the beach but chances are there’s something in the basket that you will develop a random allergy to, or you just wont be able to digest it because you got swept up in all the romance and totally forgot to bring your motility pills with you, also remember the thing about the sun killing you?

So I really hope that nothing I ever write actually romanticizes being sick. I hope the cute and funny gifs don’t take away from the reality of illness. I hope that no one reads one of my blog posts and ever thinks “must be nice” unless it’s about something completely unrelated to being sick, like a trip to Disney World or something. It isn’t nice. It’s really shitty. It’s painful and isolating and lots of awful things. I make the most of it, I laugh about it and suck as much humour out of it as possible, but it’s never an easy thing. There’s nothing glamorous about it. I mean, I’m super glamorous all the time, but my disease isn’t. And no matter how many more pop stars get diagnosed with lupus, having a chronic illness is not trendy.

10 Comments on Having a Chronic Illness is Not Romantic

  1. Applesaucey
    February 7, 2017 at 11:57 am (7 years ago)

    Yes yes to all of this. I have lupus and sjogrens and am very lucky to have a fairly mild time of it. I work full time in a fairly stressful job. But I’m also 29 and look totally fine. When I’m tired and am counting down to friday so I can latke a hot bath and watch Netflix and go to bed at 830 and people say but you’re so young. I want to slap them. When I was in college and had my first big flair and went back to school against doctors orders and the sight of food made my stomache turn and my roommate were like off you’re so lucky you can’t eat you’re going to get so skinny- I wanted to slap them. Instead I just cry alone because for me exhaustion, sun sensitivity anxiety and clinical depression are my daily struggles and crying just sort of goes along with it. Thank you for this blog, thank you for this post.

    • damselinadress
      February 12, 2017 at 3:13 pm (7 years ago)

      Thanks for your kind words! It’s really annoying when people seem to think that some of our more awful symptoms, like not being able to eat food, are perks. It gets so tiring!

  2. Laura Tietz
    February 7, 2017 at 12:48 pm (7 years ago)

    OMG YES! This is so spot on! (And I also binge-read Lurlene McDaniel books, but that was mainly because my best friend growing up had leukemia. Luckily, I learned at an early age through her that there is nothing glamorous about cancer!) I agree with what you said about The Fault in Our Stars; I enjoyed the book because I realized what John Green was trying to say. But I only got 10 minutes into the movie before I couldn’t stand it and turned it off. Anyway, I love everything about this post! Awesome, awesome, awesome!

    • damselinadress
      February 12, 2017 at 3:15 pm (7 years ago)

      Thank you!!! You’re very kind. It’s kind of embarrassing how many Lurlene McDaniel books I read. I also really enjoyed The Fault in Our Stars book, and felt like it conveyed everything better than the movie. I enjoyed the movie too, but can definitely see how people get the wrong message from it.

  3. Kim
    February 7, 2017 at 9:30 pm (7 years ago)

    Nailed it! I think there’s a line where we try to stay as real as we can but still show ourselves as more than “just a patient.” But the reality is we’re ALWAYS a patient. Even in the good moments that are Insta-Worthy we’re still fighting with everything that’s in us. Great post Lisa!

    • damselinadress
      February 12, 2017 at 3:17 pm (7 years ago)

      Great comment about having to show ourselves as more than just patients. I think it’s super important to show people that just because I have a chronic illness that doesn’t mean I’m ONLY a person with chronic illness. But there’s definitely a line there we have to pay attention to.

    • damselinadress
      February 12, 2017 at 3:10 pm (7 years ago)

      Thank you for listening to me when I say it 😛

  4. Shannon
    June 1, 2017 at 8:48 pm (6 years ago)

    My *favorite* thing is when I have to go to an Instacare or some shit in a town I don’t live in. I experienced this pleasure this week in St. George. I was down visiting my fiance and it just ended up being a really shitty week. I hadn’t been able to keep down food since Sunday – I went to the Instacare on Thursday. They had to triage me to see if I was too dehydrated to treat at an Instacare rather than an ER. Anyway, the nurse walks in and goes: “Oh I really expected you to look worse.” Uhhh thank you? Sorry I don’t look like I just crawled out of a dumpster. Trust me, the shower was exhausting. I was supposed to serve jury duty in Northern Utah that day, and I really didn’t feel safe driving 5 hours by myself because I keep passing out. I begged him for a note. The doctor was an asshole, and just wrote me off, “I don’t have a medical reason, you look fine. Just a little dehydrated.” He was 100% aware that I have lupus. Sorry for the rant, I just discovered this blog – I LOVE IT.

  5. Emrys
    September 10, 2020 at 5:10 pm (3 years ago)

    Thank you so much. I’m a teen with an invisible illness and I’m writing about this for my school GCSE speech. I’ve been told I’m lucky that I get to stay at home and miss class but like you said it really isn’t fun; it;s lying in bed silently begging for the pain to stop even though i know it won’t ever. I am so sick of people romanticizing what i have to live with all day, everyday for the rest of my life. Also, is it okay if I use some quotes from this if i give full credit?? Thank you so much 🙂


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