Having a chronic illness is not romantic — Scope | Disability forum
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Having a chronic illness is not romantic

Becca_ Member Posts: 7 Connected

Becca writes the blog Confessions of a Spoonie and today is talking about the romanticism of chronic illness in books and films and how she feels about it.

I  worry about certain things; how clean is my house, all the books on my bookshelf that I haven’t read yet,  what my parents think of me, 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 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, because I think it’s really important not to romanticize life with a chronic illness. 

I don’t want my life with eds to come across as some sort of adorable  novel, or a steamy, angsty Nicholas Sparks book.  Don’t even get me started on those John Green books. Even i'm guilty of enjoying them and finding the illness stories super romantic. But I’ve learned what it is actually like to be sick, and I realize now how truly harmful all that **** 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.

 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 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. 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.

Want to know something way better than the perks of having EDS? Not having eds at all.  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, or baking cakes to take my mind off the pain. You don’t notice the non-stop sick-a-thons but you see that i'm bloated to the point I look 7 months pregnant. 

Sometimes I worry when I write positive things about having EDS, like how it has strengthened my relationships, if that’s me contributing to the romanticization of my disease. Having a chronic illness has definitely put me in some situations where relationships are tested, and broke because of it. But eds has never once been the only reason they happend. 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 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 EDS 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.

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. 

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 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. And no matter how many more pop stars get diagnosed with EDS, having a chronic illness is not trendy.

What do you think? Does chronic illness get romanticised? Is there misunderstanding around chronic illness? Share your experience or tell Becca what you think of her guest post.



  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Such a great post @Becca_... as a blogger and reader of many of these romanticised books myself, I completely agree with the points you've made! 
  • Toffee26
    Toffee26 Member Posts: 9 Connected
    Well said I have so many thoughts in my head & hopefully will b able to put pen to paper & write how it feel to have a chronic illness as when I see drs it's hard to get it across in such a short time & I mostly forget what I want to say .good on you for being able to write yr thoughts so openly 
    Take care big hugs xxx
  • Becca_
    Becca_ Member Posts: 7 Connected
    Toffee26 said:
    Well said I have so many thoughts in my head & hopefully will b able to put pen to paper & write how it feel to have a chronic illness as when I see drs it's hard to get it across in such a short time & I mostly forget what I want to say .good on you for being able to write yr thoughts so openly 
    Take care big hugs xxx
    Thankyou Toffee26, I'm glad you could take something from my community post! It's so important for us to make ourselves heard, and that is what I'm passionate about doing, being a voice for us. I'm new to blogging, but it's great to know that I have people behind me. I'm also planning on writing a book, so watch this space!
  • Becca_
    Becca_ Member Posts: 7 Connected
    Also feel free to check out my blog, the dry humour and sarcasm is a free bonus


  • May07
    May07 Member Posts: 8 Connected
    I have M. S  Degenerative disc disease. RLS.  coliltis cognitive disorder & Hypersensitivity I'm in a wheel chair recently widowed iveI'gone frim a bubbly happy lady always out & about to feeling isolated & abandoned cos I can't do wt i used to no one visits invites me out or bothers with me.., chronic pain has destroyed who I used to be 
  • serobinson
    serobinson Member Posts: 5 Connected
    Hi all. I cannot understand how anyone could think chronic pain or illness can be romantic. .I am 65 this year. I started with periodic limb movement disorder at about 25. Took until 1996 to diagnose. Also restless legs. Hyatus hernia and Barretts.  Arthritis in right knee. Spinal stenosis and sciatica. Finally diabetes.  I find nothing romantic in any of this. All is unseen. People even say I look well. I spend the nights alone as cannot go to bed because of the spasms. Doctors talk about quality of life. Non of them want to come out in the middle of the night to see what it's like. 
    Rant over. 
  • Becca_
    Becca_ Member Posts: 7 Connected
    I think the romanticising is more common amongst the younger generation (15 - maybe 30's) on social media and in the press.  
  • Becca_
    Becca_ Member Posts: 7 Connected
    May07 said:
    I have M. S  Degenerative disc disease. RLS.  coliltis cognitive disorder & Hypersensitivity I'm in a wheel chair recently widowed iveI'gone frim a bubbly happy lady always out & about to feeling isolated & abandoned cos I can't do wt i used to no one visits invites me out or bothers with me.., chronic pain has destroyed who I used to be 
    Really sorry to hear that, your story speaks volumes to me. It's such a cruel world for us out there, no one gets it, until they get it.
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    Hi Becca - this is a great post and all too true!  I think we already follow each other in the blogosphere, but as the new community Chronic Pain Advisor here at Scope and a fellow zebra, I had to leave you a comment! My EDS and shoulder dislocation certainly does not feel very romantic today!!  I wonder if you have seen the film Unrest yet? If you have we will have to exchange thoughts! Claire x
    Claire Saul
    Chronic Pain Advisor
    [email protected]
  • SusanLowe65
    SusanLowe65 Member Posts: 1 Listener
    Hi there. Enjoyed reading your post. I have relapsing remitting multiple sclerosis which mainly manifests as fatigue and occasional sensory problems. After 27 years of marriage I have become full time carer to my  hubby who, mainly due to being born 9 weeks premature, has degenerative disc disorder, spastic diplegia caused by mild cerebral palsy and Aspergers.

    I read Me before You; it raised some interesting issues about personal choice and actually asking, not just assuming, because I am "upright" that I know best. As my own disability is unseen, I understand the frustration of comments like "but you look so well". That's probably because I know how much effort it takes to achieve "looking well".  I find it annoying that, because I am "the carer", people say "oh, you must look after yourself - being a carer can be exhausting" and yes, it can but just being upright and trying to get along in the "two-legged" world is exhausting for my hubby but that seems to go unnoticed. 
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    A fine post @Becca, and an excellent, thought-provoking read. It's very late at night for me, now, but I hope I will be able to respond more usefully soon.
    Warmest best wishes to you and to all here, 

  • Becca_
    Becca_ Member Posts: 7 Connected
    RichardVR said:
    A fine post @Becca, and an excellent, thought-provoking read. It's very late at night for me, now, but I hope I will be able to respond more usefully soon.
    Warmest best wishes to you and to all here, 

    Thankyou @RichardVR, warm wishes to you too! 
  • aeTice
    aeTice Member Posts: 2 Listener
    Hi @Becca. You have a gift for expessing your situation in a concise way and with feeling. I wish you good luck with your book.
    I don't have a diagnosis for what is wrong with me. I just have a long list of what my problems are. But my concentration has, for the past 21 years the care of my Autistic son, 8 other children (some with SEN) and now my husband who has PTSD from his service in the US Navy during Gulf War 1.
    I am 60 years old and have spent 40 years as a parent and "bad wife". We now believe I have mild Autisum, which has contributed to the failure of 4 marriages.

    I hope you have the support and help you need @Becca. Love and God Bless, Anna.
  • mandy46
    mandy46 Member Posts: 30 Connected
    Hi @Becca
    I am in the same [email protected]_  I have spine problems a fusion at l3 to s1 and cord compression from c4 to c7  and a prolapse disc at l3 which is affecting my right knee. I am in 24/7 chronic pain. I dunno whether to kill myself or put up with it.  Im also Hypothyroidic which dont help either.

  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hi @Becca. It's that man again.
    As a published novelist (please don't anybody ask  :smile:, I 'm not here to promote my work in any way) I've asked myself similar ethical questions. I think what appears to be your answer is the correct one - to tell the truth as far as is humanly possible.

    A difficulty is that readers, of whatever kind, tend to operate selective perception. Research indicates, for example, that people do not buy newspapers on the basis of the quality of information presented in them, but buy newspapers which they have learned support their own particular worldview.

    Whatever we write, therefore, has a likelihood of being absorbed according to that selective perception. The true story of my daughter's life, and mine during her lifetime, would involve the depiction of some rather unpleasant procedures - like getting the daily naso-gastric tube inserted into the body of a tiny being who had no idea what was happening to her and the litmus testing to ensure that you had got into her stomach rather than her bowel - oceans of regurgitation and scenes of great physical and emotional distress. There are very few who would 'select' to read or watch that.

    Nor does the story have the more-or-less obligatory happy ending, and the reassuring details of dedicated health professionals that many enjoy would be present but seriously off-set by the near-disasters, confusions and stupidities that we also encountered.

    The market, which determines how any published medium succeeds, wants sentimentality, romance and (within prescribed limits) drama. The last thing it wants, sadly, and the cause of so much suffering, is Truth.

    Hope that's of interest :smile:
  • samdean
    samdean Member Posts: 2 Connected
    I haven't slept in the same bed as my partner for nearly ten year's i suffer with nerve damage to my legs bowel and bladder no control over  bowel and bladder chronic problems when i sleep i worry it is pushing him away been over a yeat since we have had sex we have been together 25 years!!!
  • mandy46
    mandy46 Member Posts: 30 Connected
    Sit him down and have a talk to him see how he is feeling. I do with mine.
  • blackstar
    blackstar Member Posts: 1 Listener
    if he loves you there is no worries, I'm 55 years with my wife and she has all the above no sex in 10 years, and I'm going no where.
  • mia63101
    mia63101 Member Posts: 18 Courageous
    Hi samdean, it’s horrid I know. I have also not had “that” close contact for much longer than I care to remember. I am in a wheelchair due to lung decease and spinal injury. and awaiting to see the neurologist for leg tremor and the bladder nurse, As things got worse my husband of over 30 years announced he was totally put off me as he hears me struggle on the loo (I used to cathatarise, but now cannot) and it put him off me. I have humiliated myself by trying other things with him, to make and keep him happy somehow. He took himself off to the spare room! I used to be so active, we had a great life together. It seems so long ago. I try not to complain as he does’nt like it, but I hardly ever go out, I am alone every day. I wish he loved me as I would love and care for him if it were reversed.
  • Waylay
    Waylay Member Posts: 971 Pioneering
    Oh God, yes! 

    /Start Rant

    I can't tell you how many people have told me how lucky I am not to have to work, to be able to stay in bed all day, and (woohoo!) to be prescribed all that tramadol, diazepam/clonazepam and morphine. Funfun, yes? NO.

    I worked really hard (2 degrees, years of scut work) to get the job that I had, and I *loved* it. I was very lucky to be one of those people who actually got psyched to go to work in the morning (after a coffee, of course). I got paid a lot, too! When I developed chronic pain, I lost that job, my PhD place, and my career, as well as all my money, my retirement savings, my hobbies, my relationship, and my Dad (because he assumed I was being lazy, not having serious health problems - ar*ehole). IIlive below the poverty line now, and sometimes can't afford enough food. So great. Love it. Romance... ? If I could have anything I wanted, it would be to be able to do my old job again.  

    I hate being in bed all day. Even on good days, I'm in bed (or lying on the sofa) 19-20 hours out of 24. It's incrediblyiboring, lonely, isolating.... I wish I could just go out for a walk in the sun, instead of watching the gorgeous weather through the window. I wish I could go out whenever I wanted, instead of having to cancel things all the time. Bed is not a fun place to spend your life - it's not even comfortable. Sometimes my hips and shoulders get so painful from lying in bed so long that I just can't bear it.

    Then there's the chronic pain, which is always there, but varies from annoyingly painful to agonizing. I'm also always somewhat depressed/anxious, and Sometimes it's so bad that I literally can't leave my bed to pee until my bladder starts spasming.

    Oh, and the meds. I never found opioids/benzos fun (tried 'em a couple of times when really anxious, ~20 years ago). But when you have to take them? SERIOUSLY NOT FUN. They don't feel good, and they leave you drowsy, stupid, fuzzy, confused, dizzy, constipated, etc. The tramadol lowers my resistance to infection, and long-term use of my meds damages organs, makes Alzheimer's more likely, etc. Liver transplantation and dementia - so romantic.

    I really love it when my partner comes over, only to find that I haven't washed in days, I've barely eaten, I just want to hide under the covers or go back to sleep, and/or I'm on so many meds that I don't even make sense. He diesn'tdwant to lie down and snuggle with me because the bed is gross: I've been sweating from pain/anxiety/screwing up meds, there's hair everywhere because I've been obsessively pulling it out, and the few things I've eaten have resulted in a bed full of crumbs and stains. Sexy!!

    Oh, and did I mention that I have almost no libido, and on the few occasions I am interested and can physically manage it, my back tends to spasm halfway through so we have to stop? HAWT. 

    My other partner and I really got to know each other through FB. They posted on FB about their degenerative condition, the fact that they had needed to use a cane to walk for 2 months (at 31), and how it was the beginning of the end. They were struggling, emotionally. Having recently had to accept that I had become disabled at the age of 33, I write to them and said that they were welcome to talk to me, if they wanted. 6 months later, we were together. 5.5 years later, we're still disgustingly happy (despite bith of us having physical and MH disabilities). Best relationship I've ever had. 

    However, I've had about 6 people say, "That's so romantic! It's great that you found each other!" Yes, I'm very glad that we found each other, but are you saying that because we disabled people couldn't really date able people, so it's cool that we found another person like us? 'cause if so, I'm going to try to hit you with their cane.  Also, it wasn't romantic. Romantic is running into each other in a goth club in Whitby, or on a bridge in Prague. Talking about your pain and distress on FB is.... Eh. Normal? Sad? And we'd have much easier lives if we weren't f**king disabled, thank you very much. 

    Rant over/

    Needed that. Thanks. 


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