This Gift Sucks, Veronica. Where Do I Return It?

For months now, readers have talked about the problematic racial elements present in Divergent author Veronica Roth’s latest novel, Carve The Mark.  Young Adult author Justina Ireland wrote about the damaging content in Carve The Mark and the now-postponed release The Continent. Readers on social media have carried on that conversation and as ARCs poured out into the world, some blogs even declined to include them in giveaways. Carve The Mark seemed poised to be the most problematic, rejected YA offering of 2017.

But Roth just had to go that little bit further.

In an interview with NPR, Roth explains that novel takes place in a world where once a person reaches adolescence, they receive a “gift” or special talent:

“Well, Cyra’s is that she experiences constant pain, and she can also give that pain to other people. So the theory is that the current, which is this kind of energy that is present in the galaxy, that it flows through each person and their personality is like a mold that shapes how it comes out. And for her, it would take a lot of psychoanalysis to figure out why she thinks that she’s worthy of pain and that others are worthy of pain but – so she’s basically experiencing, like, a supernatural form of chronic pain.”

Roth explains that she was inspired by friends who have endometriosis:

“And for me, the importance of it came from I had several friends who experienced chronic pain over, you know, like, a decade and were – had their pain underestimated by doctors, which statistically is more likely if you’re a woman by, like, a drastic degree. And they were eventually diagnosed with endometriosis. This is like a couple of people just in my immediate social circle. So I thought about them a lot, about how pain takes over your life and limits your potential and how difficult it can be to find someone who’ll take it seriously.”

As a woman disabled by chronic pain from Fibromyalgia, I can absolutely back up Roth’s assertion that it’s difficult to find someone who’ll take it seriously. From doctors to family members, from “we all have little aches and pains” to “you should try [suggestions ranging from quitting gluten or doing yoga],” chronic pain patients are at the mercy of a society that doesn’t quite know what to do with us. Many of us don’t have visible signs of disability (“You don’t look sick!”). Some of us use mobility aids (“Wheelchairs are for people who are actually handicapped!”). Some of us have employment outside the home (“If you can work, it can’t be that bad!”), but others are housebound (“You’d feel better if you got out more!”). Getting anyone to listen to us when we share the reality of our lives seems futile (“Why are you focusing on how bad you have it? Try to be more positive!”), and we often feel like we talk too much about our pain. Since our resources and physical energy are limited, it’s often easier to suck it up, suffer in silence, and let ignorance slide.

While many men suffer from chronic pain conditions, their challenges are often different from women’s. Western culture constantly equates women’s suffering with something positive. We’re “strong.” We’re “warriors.” We “fight.” But we’re never, no matter what our circumstances may be, allowed to resent that suffering or wish for it to end. That’s not attractive. It doesn’t fit the mold. It makes us depressingly human to those who value our martyrdom over our lives, our hopes, and our frustrations. We’re no longer inspirational, and if our pain can’t benefit or, in the case of Carve The Mark, entertain people who want to be allies to the disabled, it’s just a bummer.

I don’t know how Roth’s friends with endometriosis feel about their pain being appropriated to make Roth, an already famous and successful author, more money. I don’t care to know because their opinions don’t represent every person suffering from chronic pain and won’t excuse the harm Roth has caused by depicting chronic pain as a “gift.” Maybe Roth’s friends have had important, life-changing experiences after their diagnoses and feel that their pain really is a gift. But I would venture to suggest that, based on the social media responses to the interview, most people don’t share that view. The notion of suffering as a gift doesn’t make chronic pain patients feel better; it makes abled people feel better.

Our pain is not “supernatural.” It doesn’t embody us with special powers that we can use to heal a divided people. In fact, many women suffering from chronic pain conditions and other disabilities have lamented that we can’t be a part of the marches and protests scheduled for January 21st. Once again, women with disabilities will be left out of a movement that should include us and be derided as “slacktivists” because we can’t get out and physically march.

Chronic pain can be fatal. People with chronic pain conditions have an increased risk of cardiovascular illness and addiction to opioids or self-medication with alcohol. In an attempt to save us from ourselves, the CDC recently updated its guidelines on the prescription of painkillers; this led to an increased suicide risk in some patients already at high risk. Yes, there is a need to take us more seriously. A white-savior YA novel where chronic pain is treated as a supernatural power is not going to accomplish that; it will harm us.

My chronic pain caused me to miss the first two years of my daughter’s life. Those memories have been lost in a haze of painkillers and cocktails of prescriptions that were meant to make me functional and only succeeded in robbing me of my life, my career, even my home. And now Veronic Roth has appropriated–for personal profit–my experience, her friends’ experiences, the experiences of millions of women who would do anything to be able to return their “gift.” We just can’t find the damn receipt.

But we have receipts on you, Veronica. Mountains and mountains of them. And gosh, we just don’t have the supernatural energy to climb over those to get to the bookstore on release day.

36 thoughts on “This Gift Sucks, Veronica. Where Do I Return It?

  1. I have used up most of my spoons on this today and it’s been for a couple of reasons. The first, as you articulate so well Jen, is the bottom of the barrel scraping horror of depicting pain as a gift. There is no interpretation, no reality, in which chronic pain can be considered a gift (My receipts? At 15 a surgical mistake left me with Type II CRPS, basically chronic pain described on the NcGill Pain Scale as being akin to amputation, 24 hours a day, 7 days a week. I’m 43 now). As I said earlier in my Twitter thread, pain makes you face the worst about yourself; your limitations, your cowardice, the ugliness of envy and jealousy. Any ‘lessons’ it had to teach me? I learned them long ago and I’m pretty sure I could have learned them without constant pain. There is suffering and there is loneliness. There is loss, of independence, of self respect, literally of your life (I have a massively foreshortened life expectancy because of this). There is guilt (I’m a burden on those I love; emotionally, financially, physically), there is the pressure it places on romantic relationships, on friendships. I don’t find this easy to say. I have learned well over the years how little people really want to ‘hear’ so my default setting when discussing my pain is “make it funny”. As Carrie Fisher once said “if it isn’t funny, then it’s only true and that’s unacceptable”. I’m talking about it here and in my twitter TL, as honestly as I can because of all the things pain is, it is never a gift. To portray it as such is a fundamental lie, one that will “be around the world before the truth has got its boots on” (Terry Pratchett’s) and that does immense harm.

    Another point that moved me to speak is the framing of this character’s pain. In the interview you cite Roth talks about the way it’s the “psychological issues” of the character; that she feels the energy of the universe as pain because of something ‘in her head’. Ask any Chronic Pain sufferer and they’ll have a story to tell you about the challenges of even getting diagnosed. One thing many of us have heard is that the pain isn’t real, that it’s “all in our heads”. I myself heard this in the four years it took to get a diagnosis. The idea that pain is somehow a choice, related to psychological issues, is nothing less than disgraceful. As you say, cp sufferers spend their lives having their pain challenged, reduced, ignored and derided. The last ting any of us need is a character that embodies this attitude and validates it.

    “Ahhh ha” Roth’s defenders will say, “”this is fiction, fantasy even. It’s not real” of course the problem with that is when you appropriate real life experiences, especially once outside of your own, then your representation will have an impact. More I would argue that once you step out of your lane, that representation must strive to be as truthful as you the outsider, can achieve. Truth after all is the cornerstone of writing; regardless of genre, style, character or plot. Terry Pratchett’s universe flies through space on the back of a giant turtle but we recognize the “truth” of his stories. When we read Austen we are reaching into a past we can barely recognize; what connects us is the truths Austen tells. I would argue that in this Roth has singularly failed to tell the truth and in that failure she has done harm.

    What harm? As I said early I was 15 when this happened to me; the target audience for Roth as a YA author. Had I read this novel at that time? At a time when I was stuggling to get a diagnosis, trying to acclimate to the idea that this pain would be with me for the rest of my life, that there was no magic pill, no cure? Had I read this book then I suspect it might have broken me. Without question it would have hurt. All I can think about today is some kid out there. They’ve been in car crash, or broken a limb that’s done nerve damage and they’re now dealing with the fact that pain will be a permenant part of their life. That author they love, the one that wrote Divergent, is bring out a book with a character that has the same as them. And then they read that. Every time I take a moment to imagine that scenario I’m left genuinely afraid for that hypothetical kid. Representation matters. Truth matters. This is why. Thank you Jen for this post and this space.

    1. And thank you for such an articulate comment. I don’t personally suffer from chronic pain so I can’t speak to the issues brought up by this book but your comment really brought home to me the reality for those who do. So thank you and I hope you have a great day.

    2. That was beautifully said, and thank you. As one chronic pain sufferer to another, the bit about the character’s psychological issues causing her pain would have made me flip a table, except that I’m having a particularly bad day pain-wise and even moving my arms more than a few inches hurts way too much, let alone trying to flip items of furniture. I cannot count how many times I’ve heard from family members, acquaintances, co-workers, and even a couple of doctors that my pain was “all in my head” and that I’d magically stop experiencing severe pain from multiple chronic illnesses if I just dealt with my “emotional issues.” It’s right up there with being told that I could stop needing my wheelchair if I just decided to put my mind to it, being told that I’m brave and inspirational when I’m just buying groceries or something, and parents frantically apologizing to me because their small children said, “Mommy, how come that lady is in a chair?” instead of just telling their kids, “Some people use chairs like that to get around! Isn’t it cool how even if someone can’t walk the way you can, they can still go places in a chair like that?” on the list of “things that able-bodied people inexplicably seem to think are helpful which actually make me hate them.”

      (And man, do I hear you on the “make it funny” thing. I joke all the time about ha ha, don’t I look silly trying to navigate this wheelchair-unfriendly area in my wheelchair, ha ha, you know me, always wanting to stay in bed all day, ha ha, I’m such a pushover that sometimes when I’m out in public complete strangers literally push me around, ha ha ha ha ha, when an awful lot of the time what I really want to say is, “Trying to navigate this inaccessible space whose designers clearly didn’t think I deserved to be here makes me feel humiliated and worthless. I fucking hate how exhausted I always am and how it makes me miss out on so many things I would love to do. It is infuriating and dehumanizing beyond all words to have complete strangers decide they have the right to move me around like I’m a goddamn piece of furniture just because I’m in a wheelchair. I hate this pain, I hate needing this stupid chair, I hate being sick, I hate all of this, and I hate that I’m not allowed to say any of that because then I’d be an angry cripple instead of a plucky, inspirational one, and we can’t have that!”)

      Thank you to Jenny, too, both for the entire post and for specifically mentioning the fact that a lot of us would love to go to the protests on the 21st but physically can’t do so. I hate feeling like I’m not standing up for my own rights or the rights of the other minorities who are going to be royally fucked by our new Asshole-in-Chief and his cronies because I cannot physically attend a protest. I actually asked a friend who’ll be at one of the protests if she’d consider carrying a sign for me, maybe something to the effect of “My disabled friend would be here if she weren’t too busy trying to figure out how she’ll survive if the ACA is repealed.” She said she didn’t really think she could manage more than one sign and she already had hers, but she’d be “thinking of me.” Which is nice, I guess, but still means that as far as the world is concerned, I didn’t show up, I didn’t speak out, I didn’t fight back, when the reality is I would gladly scream my opposition from the rooftops if only the rooftops had an elevator so I could get up there.

      1. MAN your comment is really spot on. I don’t have any disabilities but I’ve worked at a facility for severely mentally disabled people and it sure was super eye-opening.

        You mention people thinking of you as brave and inspirational when you do mundane/necessary things like buying groceries. One day, my friend and I were eating lunch in our college’s garden, and a girl with one leg passed by with her crutches. My friend was like: “And then there are wonderful people like that girl who put us all to shame…”. We had a discussion on that. People with disabilities are not around to make us able-bodied people inspired or more compassionate. They’re around for the same reason we are: they have their own stuff to do!

        Sorry I didn’t want to go all “allysplaining” but I was just trying to show some sympathy and tell you that I find that idea revolting as well.

        If I lived in the US I would bring your sign to the protests. If you’re on social media, maybe use it as a profile picture? “Yes, I’m tweeting, but the protest location is not wheelchair-accessible”?

        1. No worries on the “allysplaining” front – I love to hear from able-bodied people who will call out the “look how wonderful and inspirational that disabled person is” crap. Which is kinda funny, really, that what I want in an ally is for them to tell people to stop admiring me, but it’s true! I am totally cool with being admired because I’m nice or funny or good at Trivial Pursuit or whatever, but “Wow, look at that woman buying food and toilet paper and toothpaste!” is a really dumb thing to be inspired by just because I’m doing so while seated. :-p

        1. I didn’t see this till just now, but if you actually did this you are super awesome. (And even if you didn’t actually do it, you’re still pretty awesome for considering doing that for a stranger.) :)

  2. I wonder what I would get if I returned my chronic chest pain? Being able to ride a bike in the unexpectedly mild winter we’ve been having? Going rock climbing? Going to fabric stores or taking classes on how to make the Merida cosplay outfit of my dreams? Not being fused to a hot water bottle? Having the energy to put blue streaks in my hair? Protesting Trump? Man, I just can’t figure out why I don’t like feeling like my ribs are on a spit over a roaring fire.

  3. Wow, seriously? The Force decided “you have low self esteem so you deserve unending pain”? That sounds an awful lot like “it’s her fault she’s in pain all the time”, and it’s supposed to represent real people with real conditions.

    I like who I’ve become as a result of my chronic pain. I’d have to think real hard about whether I’d go back in time and undo it. But if everyone else got nifty superpowers and that was all I got, I’d be a lot less serene about the whole thing. WTF?

    From following the links, I seem to understand that this character is black? With loose curls instead of tight kinky hair, and chronic pain, and low self esteem. These are all things that apply to me, specifically. But of course, people like me are never good enough to be the protagonists. The protagonist is a white boy, of course.

  4. Head tilt level = cranial inversion. No, it’s not a bloody gift. And the protagonist has to grapple with why SHE thinks SHE’S WORTHY OF THE PAIN?! Flames. Flames, on the side of my face…

  5. Sounds like something out of a medieval hagiography, where saints are honored to be martyred in gruesome ways or offer up their sufferings when they get hideous physical afflictions (the most prized of all, of course, being Stigmata).

  6. My grandmother had rumatoid arthritis and I seem to be following in her footsteps. I believe my grandmother would simply say, “Fuck Veronica and the horse she rode in on!”

    1. THIS. My mother has RA, and I am very frightened that I will have it, too. The best advice on not activating that gene? Don’t subject yourself to any unnecessary stress. *pause blink blink pause silence pause*

      *dials* Yes, hello, chronic depression and generalized anxiety disorder? This isn’t gonna work out.

      But seriously, I appreciate your comment and Jenny’s story and everyone else’s comments because they’re like little Internet-waves saying “Hi! You are super-duper not alone!”

      I hope you don’t wind up having RA, but if you do, here are so many Internet hugs (or whatever expression of emotional solidarity that makes you comfortable!) and the absolute best hopes for medication and physical therapy and everything else. One thing you might want to consider? If you can afford the GP, it might be worth asking for a referral for massage therapy. It sounds silly, but my mom’s been getting them for about a year now and her mobility is so much better :) I don’t know if that helps, but it seems like a good option if you can access it!

      Oh, and fuck the pain-martyrdom narrative.

      1. If the gene appears to be kicking in (your pain pattern/other stuff fits) but the medical establishment is trying to claim “you don’t have RA because your rheumatoid factor test is negative” or something along those lines, this is basically bullshit. Like a lot of other health issues that disproportionately hit people born with vaginas, there is NO definitive test for/against RA. (This is my mom’s situation–everything else fits, but she doesn’t test positive for rheumatoid factor. If you aren’t sure they’ll believe you, Mayo Clinic has a short overview of RA on their website which is why *I* know.)

        Also, yeah, massage may well be helpful or at least worth a shot.

        Fuck the pain-martyrdom narrative FOREVER.

  7. Chronic pain does not run in my family; we run in it. All of my dad’s sisters, my mom, several of my cousins, and me.
    It is not a gift.
    It is -not- a gift.
    Three family members died due to complications from their conditions in eighteen months.
    I was born at twenty-four weeks, so I knew a thing or two about how society viewed me, a disabled person, before I got my endometriosis diagnosis. I got it, and was relieved it had a name and a treatment. My devastation that “oh no, -another- part of my body doesn’t work” overshadowed that entirely. The news of my sterility made me cry. I’m Sephardic Jewish, and long story short, I knew I’d be ostracized in my family and possibly community. My mom and one of my aunts have been incredibly understanding.
    I am a trans man who doesn’t pass and won’t due to let’s not get into it. Having endometriosis makes me think in dark times, “see!? YOU’RE STILL A GIRL!!” and it goes into a downward spiral from there.
    Not a gift. I’m always glad to meet other people with endo–it’s an instant understanding, lack of judgment and a feeling of solidarity. Not a gift, though.

    1. Hug of solidarity. My husband is a trans dude who also had endo. And yes, being struck with unpredictable, frequently massive, invariably excruciatingly painful, impossible-to-ignore periods was a constant dysphoria trigger. I am sorry you have to deal with the same. I wish you lots of strength to tell that voice that lies to you about this somehow making you “still a girl” to kindly fuck right off. But I know that’s easier said than done.

      My husband was lucky enough to eventually get a referral for a hysterectomy – not for the endo, mind you. He spent over a decade having providers deny he even had endo (even thought the symptoms were clear), dismissing his pain, glossing over it as “just cramps” and treating him like he was making a big deal out of nothing. But he developed a different condition that required a hysterectomy. During the surgery, the doctors found that his insides were absolutely ravaged with signs of years and years of extremely severe endo. The surgeon who recounted this to me, as my husband lay in the recovery room, was baffled as to how this could have gone on for so long: “But – that must have been incredibly painful!” It took serious effort on my part not to jump down his throat. Yes. Yes it was incredibly painful. Thank you for finally acknowledging this after 10+ fucking years.

      Zev, I really hope that you find something that helps you out. I realize that surgery is not attainable or desirable for everyone, but maybe there will be something else that will at least get you some relief. But in any case, hugs and fist bumps of solidarity and fuck endo.

    2. I don’t have endometrosis, but I have a non-binary friend who almost certainly does. According to them, the *physical* pain is pretty atrocious and it’s causing them dysphoria on top of that. So virtual hugs and/or appropriate sympathies to both Zev and Neurite’s husband.

      (And yeah, regardless of gender, getting a hysterectomy can be incredibly difficult–my mom had serious uterine pain, wasn’t a kid and definitely didn’t want more kids, is a medical professional herself, and she still had to fight the establishment way harder than she should have.)

      What I *do* have could practically fill a book. For chronic pain specifically–I have arthritis (herniated neck discs and degenerative disc issues in my lower back), probable fibromyalgia, hand issues (also probably arthritic in nature), a kneecap that has literally dislocated while I was lying in bed and shifted wrong causing two days of increased pain and drastically reduced mobility (the ligaments are intact so surgery is not likely to fix it), and occasional migraines. I also have kidney disease, so there goes the whole class of NSAID painkillers. I have “opiate allergy, can’t take tramadol or flexeril” in every place I can get it both because I have had side effect issues with opiates and opoids and because I have both a personal and family addiction history. So basically I pop a lot of tylenol, try to get my PT exercises done even though sometimes it feels like I’m trading pain points for fatigue points, and wish my state would legalize already so I could quit worrying about my pain management so much.

      (For shits and giggles, I also have bipolar II and a tremor problem that means I’m basically accepting being less well controlled as far as the bipolar disorder goes because the cocktail I’m on now doesn’t seem to be giving me tremors or other notable side effects. Cherry on top–not formally diagnosed, but I am neurodivergent with some major sensory issues for sure and am probably autistic.)

      So totally totally NOT A GIFT. I’d like to see how Veronica Roth would feel after a day in my body and mind.

  8. I’ve always hated it when people claim that a disability, or a sickness, is a gift. it’s one thing to try to stay strong. It’s another cup of oolong entirely to claim that it’s a good thing.

    If cancer is a gift, then tell your kids to start smoking. If poor vision is a gift, then do your best to ruin your kids’ eyesight. If being unable to walk is a gift, then break your kids’ legs and keep breaking them whenever they heal.
    I think you get my point.

    1. Seriously, this whole thing sounds like she cribbed it from one of those narratives with titles like “The Pitous Sufferyngs and Hooly Dethe of Seynte Synnove the Sychotic, done into Englysshe for the Aedificatioun and Ensample of Yonge Redours” etc.

  9. Thank you so, so, so much for writing this down and putting word to the frustration I am feeling. I used to have a combination of endometriosis and a birth defect that basically means that my vaginal walls were fused together in some places; essentially multiple hymens. That meant I was in labour – like, contractions, giving birth – and bleeding until I fell unconscious, combined with horrible migraines, like three to five days every single month until I got surgery, and getting it was one of the few things in my life I never regretted for a moment. I can’t even count the times gynaecologists told me “It can’t be an endometriosis, you’re too young” or “If an ibuprofen doesn’t help you, I can’t do anything for you” and stupid shit like that, and how often just about everybody, including my own mother, told me “Come on, every woman experiences that!” Even the hospitals to which I was admitted after falling unconscious from blood loss or just plain lying on the ground and not being able to uncurl again because of the immense pain, basically told me all they can do is give me a mild painkiller the likes of which people take against a regular ol’ headache, the implication being they didn’t believe my pain was real, they just believed me to be whiny, or to want to skip school, or college, or work, or whatever. I was told over and over again it was just in my head, sometimes (even by professional counsellors) paired with esoteric statements like: “You’re only experiencing these pains because you reject your femininity!”, which is the same as stating someone’s only depressed because they wear dull colours, and of course I’m so fucking sorry for being agender, I will stop not feeling like a woman at once, because it’s clearly my fault that I have that problem. Like I said, getting surgery and having a normal life for the first time since I hit puberty was one of the best things that ever happened to me. This pain was NOT a gift. It hasn’t taught me ANYTHING except how petty society as a whole can be towards women with health problems such as these. Because women are naturally wimpy and when a man suffers from chronic pain, that must be real and taken seriously and treated immediately, because otherwise he would just heroically shut up. (My grandpa was a chronic pain patient after a horrible car accident that essentially pulverised his femur. He did NOT have to go from doctor to doctor for eight years until he was finally taken seriously.) I just hate everything about this “Oh, it’s a psychological thing” angle, because no, it is NOT. I feel actually TRIGGERED reading about this shit. And I am lucky enough to have been born a white woman, because WOC suffer from not being taken seriously even more than white women. I can’t begin to imagine what it must be like for a WOC chronic pain sufferer to see this shit hit the shelves destined to appeal to young, impressionable people. Thank you for phrasing it in words other than just uncontrollable swearing and insulting.

  10. As someone who has suffered from endometriosis for the last 14 years, I can assure Veronica Roth it is most certainly NOT a gift. I have tried for years to find some sort of positive spin on how I got “chosen” to have debilitating pain and my ability to have children snuffed out and have yet to find one. Supernatural? Pffft. Nope. It affects so many parts of my life, in so many ways. It’s exhausting-every single day. I try to look at the bright side-I’m able to work full time while others can’t do that. But even then-I may be able to limp through a work week but by the end of it I just want to curl up in a ball and do nothing, all so I can recover for the next week. No one-except others who suffer from chronic pain-can understand how mentally and physically draining it is to be stuck in this broken shell of a body. I feel like I’m constantly having to re-explain why it is that I can’t do this and that, and sometimes I do just cave and do it to avoid having to explain to someone yet again. Maybe I’m just extra sensitive right now because I’m about to start my period which makes my pain jump off the charts, or because I’m worried about losing my healthcare due to this pre-existing condition, or because I can’t participate in the march in St. Louis this weekend but this REALLY hit a nerve today. Next time I’m given some “supernatural” gift, I’ll take being a vampire or a witch or even a werewolf over the misplacement of endometrial tissue outside of my uterus thank you very much.

  11. Too bad the premise is so weird. It would actually be interesting to read about a protagonist with chronic pain and the dilemmas raised by being able to literally share that pain with others.

  12. You know even as a sufferer who some of my pain literally is caused because of my head (depression, anxiety, bipolar combo manifesting as chronic back pain insofar as anyone can tell since nothing else is physically wrong with my back…my knee and ankle? Who the fuck knows other than the weather mostly controls them….that and how long I’ve been on them and if I have climbed stairs or not since nothing shows up on any kind of scan mri-ct-xray and hasn’t for the past 6+ years this has been going on) it’s still insulting to hear the “it’s all in your head” comments. Of course mine also come with the typical shit you hear with depression and anxiety as well so it’s even more infuriating (we all have sad days/just be happy/nothing to be anxious about/go outside it’ll help/just get some sun-yeah and get the shit burned out of me? No thanks I’ll pass plus the sun is an evil ball of hate……). And the looks I get on days like today where it’s freezing and raining in the morning and then sunny in the afternoon and I am using my cane and all my braces (knee, ankle, wrist, elbow)…..if looks could kill…..

    Our local women’s march in my closest city is making it short and as accessible as possible for people with disabilities and chronic pain and have it in the description even. Which is the only reason I am able to go. Plus it’s organized by our local bookstore which is great since they get more exposure too.

    1. I just want to throw in that it doesn’t necessarily have to be “in your head” just because shit hasn’t been found yet. In my case, I know why I have pain in my joints when I eat too much gluten, but my doctors think I am “fine”. Not because there are no tests that can detect what’s wrong, but because you don’t order a blood test when the problem is a chronically inflamed gut. But they went with the blood tests which ~surprisingly didn’t turn anything up, except that my inflammation markers are too high. Why could that be, I wonder.

      In general though, it of course doesn’t matter whether there is any physical reason for your pain that could be found with the right tests. If you are in pain, you deserve to be taken seriously and to get the appropriate treatment.

  13. On top of all the other problematical bullshit that everyone else so eloquently explained, the “she’s in pain because it’s all in her head and she needs therapy” bit makes me want to flip a table. Because for me, it was the other way around. I heard “It’s just in your head, it’s your fault, just get a grip, you’re just imagining things, I’m not trying to diagnose you, I’ll just send you to a therapist!” so often that I started to believe it. After a year and a half of that bullshit, I was depressed – a fact which was then in turn used to undermine my credibility and erase what I was feeling so they wouldn’t have to treat me.

    Making money off telling young adults that the pain they might be feeling is their fault and they just have to get therapy to make it go away? That’s just plain wrong.

    1. That pretty much describes what the medical industry did to Kurt Cobain, assuming his constant stomach pains must be withdrawal symptoms and sneaking him opiates when he had finally kicked, getting him hooked all over again. It’s almost certain he what he actually had was Crohn’s disease.

  14. I have some sort of unexplained chronic pelvic pain. It’s super fun because it’s cyclic and I really don’t want to have surgury to confirm/deny endometriosis because it seems so pointless to me since there’s not much of a treatment plan for it that we aren’t doing already. Opioids make me super sick and give me insomnia (while making me super super sleepy) so I don’t take them unless the pain is so terrible that I can’t function that day. Even then I only have about 4 solid hours of relief before the nausea starts. NSAIDs stopped working for me long ago. It’s cute when people refer to NSAIDs as pain killers because to me they may as well be sugar pills.
    For the last year or so I developed chronic migraine to go with my chronic pelvic pain. For 2 years I asked my doctor if they could be linked and I kept being told that it wasn’t possible. Once the migraines started to get worse last year I decided to look harder at scientific research done on the subject (I’m a biologist) and low and behold studies have found that it is SUPER common for women with severe pelvic pain to have migraines as well. It’s so nice to be believed by my doctor. Anyone who would like to have this awesome gift can come take it. I sometimes wish I could share it with people temporarily so they could know the level of shitty I feel that day. Wouldn’t that be nice?

    Also for all of those stupid people who say it’s “all in your head.” Well off course it is you twat, my brain is the organ interpeting the pain signals coming from my sore organs! What I want to know is how are you going to help people manage/eliminate it instead of just telling us to shut up because you don’t have it as bad as the next guy?

  15. Oh fuck this shit! Why do people always have to try to make the suffering of others out to be some positive thing? I am so fucking sick and tired of people telling me my cancer will do x, y, z or that it’s all part of God’s plan (then, fuck God)! It doesn’t serve to make me feel any better. So they must do it to make themselves feel better. But I don’t give a rat’s ass about them feeling better about MY suffering. And these feeble asinine statements make me feel worse and piss me off. Life just sucks sometimes. And it’s not fair. It just is. Stop trying to make some kind of purpose out of it or find a reason for it. There isn’t one. And I don’t want to feel better about having cancer. I just want the goddam fucking cancer to go the fuck away and stay gone.

    1. I really, really loathe people who tell people dealing with something terrible that it’s all part of God’s plan or (I hate this line so damn much) “God only gives us what we can handle!” I don’t know how on earth they think “God decided you could handle cancer” or “God decided you could handle your loved one’s death” or “God decided you could handle being raped” (I literally was told that one once and it took some serious self-control not to punch and/or scream at the idiot who said it) is a comforting message, since it boils down to “God thinks you somehow deserve this horrible thing and personally made sure it happened to you,” to which “well then, fuck God” (or “well then, fuck that version of God”) seems like the only reasonable reply.

      Accordingly, a comment that I hope is a little more helpful: fuck cancer. It fucking sucks and I know there’s nothing I can say that will make it not fucking suck. I am sorry you have to deal with its colossal suckiness, and I sincerely hope you find a treatment that makes it go away and stay gone.

      1. It might have been fun to punch the idiot who made the rape remark and then say, “God decided you could handle THAT!” Not always practical, alas.

  16. I had a stroke at 18 and wound up with 24/7 migraines for the 24 years since then, complete with constant sensory hypersensitivity, nausea, dizziness, and insomnia. If I read a book at the time they first flared up that said my pain was a gift and yet I deserved it for being weak in some way, I’d have been beyond upset. If it suggested that giving people my pain was a good thing, my mind would boggle. Why would I want anyone else to feel what I feel?

    I can’t tell you how many doctors I saw who referred me to a therapist instead of a neurologist. Or the doctors who overmedicated me or refused to medicate me at all with even nonnarcotics. Or all the people who told me to just take a Tylenol and I’d be fine because a migraine is really just “a bad headache.” Thankfully, I come from a long line of migraineurs so my family has been incredibly supportive. Even my mom, who has dealt with cancer twice, has told me that just because she’s going through chemo doesn’t mean I don’t have the right to feel like shit for feeling like shit.

    I’d be lying if I said I hadn’t learned a lot because of my pain and it has forced me to be pretty zen about life (intense emotions make the pain worse, so zen via self-preservation), but I still have my bad days when I just wish for nothing more than even a bog-standard headache in its stead. And frankly, if I thought a friend of mine had used my pain to produce some ableist bullshit for a profit, said person would no longer be my friend.

    Long story short – thank you, Jenny and others here in the comments. Thank you for encapsulating what chronic pain patients deal with every day. It’s not a gift, it’s not a special thing, it’s not a trap to make neurotypical healthy people feel bad for us. It’s just a burden we carry while we carry on living.

  17. TL;DR Glorifying martyrdom in any form is hella problematic and wrong.

    True story, I used to do the Taylor Swift thing of always positioning myself as the victim because it’s easier to accept sympathy than to confront your own failings. I took this to such an extent that I believed being physically injured would make me more appealing to people. As in, I had daydreams about falling down a flight of stairs and being rescued by a handsome guy.

    What does that have to do with this? I equated pain with my value as a person. I thought that physically, mentally, and emotionally martyring myself was the only way I could be a worthwhile person.

    While there’s a metric fuck-ton of psychological backstory that fed into that mindset, I bolstered those toxic beliefs by consuming stories that focused on a female character being wounded in some way (i.e. victim of intimate partner violence, victim of sexual assault, physically disabled/challenged in some way) who is ultimately “healed” or “saved” by a male character through (an inevitably unhealthy) romance. After I was actually sexually assaulted, developed and being treatment for an eating disorder, began to confront childhood emotional abuse and began the process of coming to terms with the ways I bullied my sibling growing up, I realized that being a confident, self-loving, healthy in as many ways as possible person was the best thing for me.

    That’s why I feel this kind of story is really dangerous. It sets up a precedent for pain/disability/disease as a desirable characteristic in a person (especially a female/femme person). I’m not saying I don’t want more romances written about people with pain/diasability/disease, but they should present those conditions realistically, as conditions that often present a significant barrier to the things you want to do and not as core traits of a character’s personality.

    Wow, that was long… one final thing? Reading the BDBuffyRW posts has made me more sensitive to the sexualization of violence (especially against women/femme people) in fiction, and I think the fetishization of pain (not in a mutually pleasurable, safe, sane, consensual [BD]SM context) probably intersects with that. Any thoughts from the brilliant Trout Nation?

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