Chronic Pain and Coping: Why Romance Novels Are My Equipment For Living

Eleventy billion years ago, when I was in college, I took a bunch of classes with an awesome professor who used the Blues as a method of framing Southern American literature. We read William Faulkner and Alice Walker and listened to Bessie Smith and just had feelings. Both the Blues and literature have been described as “equipment for living” (read Kenneth Burke’s literary theory tonight if you can’t sleep), a means of capturing what’s working and not working within our lives and our greater society, of celebrating our joys and coping with our sorrows. 

Now, once I got my degree I promptly pushed all that literary theory out of my brain, but the soul of what I learned never left me. I still listened to Ma Rainey and read Toni Morrison. Then my life changed, and my reading tastes did as well. I’d been reading romance novels since I was a teenager, but not as voraciously as I did during my mid-twenties and on. I no longer read as much “literary fiction” (a label I find obnoxious and pretentious) as “popular fiction.” I put down my Louise Erdrich in favor of Eloisa James.

Why? Because I got sick, and romance novels became my coping mechanism, my equipment for living. Everything in the Regency felt softer, easier to digest. Life was about balls and stolen kisses and pretty gowns and it would all be okay in the end.

In 2009 I started experiencing strange pains in my body. One day my hands and arms would hurt so badly that I could barely open a bottle of water. Two days later I was fine. The next month, my shoulders and back hurt so badly I could barely move. Eventually the pain would subside, but I would have days of crippling fatigue, unable to get out of bed.

I wasn’t diagnosed with fibromyalgia until 2013. During those four years I had enough blood drawn to feed the entire cast of True Blood. I had MRI’s and CT’s, and I was told, unequivocally, that nothing was wrong with me.

I spent a lot of time in doctor’s offices and when I left the house for my appointments, filled with anxiety that I would again be told that this was somehow all in my head, I would grab my security blanket—a dog-earred Edith Layton paperback. Once I got an e-reader, I had her entire backlist at my fingertips. I added Eloisa James and Jane Austen and Sophie Jordan and Julie Anne Long and Jill Barnett to my warm and fuzzy file.

Those doctor appointments made my stomach hurt. I would hold out hope for a diagnosis, and instead I would be summarily dismissed. I was told I was depressed (obviously), had anxiety (well, duh), was too stressed (you fucking think?) and it was strongly implied that I was either attention seeking or that I was a giant big baby who couldn’t handle the daily aches and pains that come with getting older. You know, like at 28.

After being told again that I was fine, one of my doctors looked at my e-reader and said, “You know, you read more than any of my other patients. You’re always reading when you’re here.”

I wanted to say, “If I wasn’t reading, I’d be screaming.”

I retreated to Regency ballrooms where the worst thing that could happen was that Prudence spiked the punch. I felt a certain sympathy for Mrs. Bennett and her “poor nerves.” I considered buying a fainting couch and smelling salts and diagnosed myself as having “the vapors.”

I started to believe the hype. Maybe I was, somehow unintentionally, seeking attention. I saw a Law & Order that featured Munchausen’s and wondered if I had that? Maybe I really was just a giant baby.

Then I had my tonsils out, which everyone told me would be the worst experience of my life short of birthing a ten pound baby, and it wasn’t that bad. I went back to my surgeon after six days, already having given up pain medication, and told him I was ready to go back to work now. “You’re insane,” he told me. “Most of my patients are still drooling and hate me at this point in recovery.”

“Well, it hurts but it doesn’t hurt that bad,” I said. I knew what that bad was, and this was manageable.

“You have a crazy pain threshold,” he told me, shaking his head. Then he asked, pointing to my book, “Whatcha reading?”

The following summer I felt a little sick while on a trip with my mom and sister, back and abdominal pain making me go back to the room early to take a nap. Turns out I passed a kidney stone. But again, it sucked, but it wasn’t that bad.

Book Carried Away - Jill Barnett So I somehow managed to survive a kidney stone and a tonsillectomy with little fuss, but according to the medical community, I was still exaggerating my pain episodes. Even though I never asked for drugs or a written excuse to be off, it was implied that I was drug seeking or looking to avoid work. I would clutch my Desperate Duchesses book in my hand and grit my teeth. The Duke of Villiers would not put up with this shit.

Then the pain got really bad. My knees ached. I had trouble going up and down stairs. I felt like I had somehow been badly sunburned under my skin, even though nothing was red or swollen, I swore I could see heat radiating off my legs. It hurt to towel myself off after a shower. I ached everywhere, my hips and shoulders so tight I felt like I was in a steampunk corset all day, without the bitchin cleavage.

I called in to work sick more often than I wanted, riddled with anxiety that I would lose my job, and I would curl up in bed and read Carried Away for the millionth time, the “ten toes down” scene making me smile even when I wanted to cry.

I told my doctors that I thought I had fibromyalgia or maybe chronic fatigue syndrome. I was told I was “too young for that” and my personal favorite slap in the face, “I’m not convinced fibromyalgia is a real diagnosis.”

I was ready to give up. I wasn’t doing this anymore. Clearly there was something wrong with me mentally or emotionally and I just needed to accept this was how I was going to feel. I was depressed, anxious, stressed out. All the causes of my phantom disease were really by-products of feeling like shit and being told that I was fine.

My husband and mother pressured me to try one more doctor, one more time, when I really wanted to give up. I wanted to cry and sleep and stay in bed forever. The thought of meeting one more stranger and being dismissed, overlooked, made me nauseated.

Book Pride and Prejudice I went. I brought my all-time-go-to-depression-bunker-buster, Pride and Prejudice. My hands were shaking when I talked to the doctor, my brain desperate for her to leave to the room so I could accept my rejection and go back to the assembly already.

I am in no humour at present to give consequence to young ladies who are slighted by other physicians.

“You need to see a specialist,” she told me. “Something is wrong with you and I don’t have the tools to figure out exactly what.”

What. The. Fuck.

She sent me to a rheumatologist, a really good one that took forever to get into. Again, I was almost physically sick with anxiety the day of my appointment. I did yoga breathing. I pictured Mr. Darcy rising up out of the pond, his shirt clinging to him (yes, I know that didn’t happen in the book, sue me).

He spent a long time with me. He went over my medical history, my family history, my emotional health, my job, my family, my support systems. “What do you do to feel better?” he asked me.

“I read, a lot,” I said.

“Good,” he said. “Keep doing that.”

A doctor had just prescribed me books, motherfucker.

Then he told me, “You have fibromyalgia.”

I wanted to tell him how ardently I admired and loved him.

And I cried. I sobbed right into my Kindle, not because something was wrong with me, but because something was wrong with me. I was really sick. This wasn’t bullshit. He explained to me that my story is typical, his patients are dismissed and brushed aside and generally eye-rolled at because you can’t diagnose fibro with a blood test or scan. You eliminate other factors. Plus, it affects women more often than men, and just like the Regency Mamas I’d read about, the medical community was happy to blame my symptoms on “nerves” rather than investigate.

I’m better now, mostly because I know what I have. I take prescriptions to help manage the pain and fatigue, but most of it self-care. I can’t “over-do” physically anymore; I have to pace myself. I’ve become more aware of my diet (although kicking aspartame is like kicking meth, sweet delicious meth), and I make sure to take time to do what I enjoy, what I love, to decompress.

I read romance novels. I read them because they are awesome, emotionally-wrenching yet fulfilling, and smart. I read them because I get closure at the end. There will be a happily ever after. There’s an answer, a solution. Life is full of ambiguity. I’d personally rather my fiction not be.

Someone might say that I read these books because “they do the work for me” by presenting me with an ending I already know ahead of time. I won’t have to struggle intellectually with what’s going on. This couldn’t be farther from the truth. Yes, romance novels come HEA guaranteed, but it’s not about the end, it’s about how you get there. I think it’s a testament to good writing that I can be so emotionally involved with the text when the end is a forgone conclusion. I know things are going to be okay, but my pulse still races with that first illicit kiss, my heart aches when the hero and heroine reach their black moment and think they’ll be alone.

I get that emotional journey with a happy sigh at the end. How could anything be better?

So what’s Dr. Elyse’s prescription for Regency Feel Goods?

Book Pride and PrejudiceBook Sense and SensibilityBook Mansfield Park

Jane Austen is obvious, and I break her out when I really need a dose of warm and fuzzy. Pride and Prejudice ( GR | A | BN | K | free at PG ) will be my favorite book forever, I suspect, but I really love Sense and Sensibility ( A | BN | K | Free – PG) and Mansfield Park ( A | BN | K | free – PG) as well.

 

Book His Dark and Dangerous Ways     Book To Wed a Stranger     Book To Tempt a Bride

I’ve discussed Edith Layton’s excellent Regencies in a previous post, and I still go to His Dark and Dangerous Ways ( A | BN | K), To Wed a Stranger ( A | BN | K ), and To Tempt a Bride ( A | BN | K ) when I want to revisit an old friend.

Book One Night With you        Book Once Upon a Wedding Night        Book Too Wicked to Tame

I love Sophie Jordan as well. One Night with You  ( A | BN | K ) and Once Upon a Wedding Night ( A | BN | K ) have all the feels. My all-time favorite Jordan novel is Too Wicked to Tame ( A | BN | K ). It has a feisty heroine and a broody hero named Heath who has a reputation for being mad. It’s all like Wuthering Heights meets Pride and Prejudice After Dark.

Book When Beauty Tamed the Beast      Book A Duke of Her Own

As you all know, I’m an Eloisa James fangirl, and would probably cry if I met her. I’d also probably hug her whether she wanted to or not while sobbing things like “Villiers…just…FEELS…I can’t even…” When Beauty Tamed the Beast ( A | BN | K ) is my favorite fairytale trope coupled with Regency House fanfiction. For reals. And it is so fucking good. A Duke of Her Own ( A | BN | K ) features my favorite rogue, the Duke of Villiers, who decides it’s time to reform…and brings all his bastards under one roof. This book has plot moppets like Tribbles. They’re just multiplying. And the heroine…Eleanor is glorious.

Book The Perils of Pleasure

Julie Anne Long’s Pennyroyal Green series is phenomenal. I’ll always love The Perils of Pleasure ( A | BN | K ) a book with tons of action (the heroine saves the hero from being hung…hanged?( Maybe he is hung but about to be hanged?) and it’s a lot of action for a Regency.

Book Carried Away      Book Wicked      Book Wild     Book Wonderful

And then there is Jill Barnett, who does not write Regencies, but is awesome regardless. Carried Away ( A | BN | K ) is a book about two brothers who, filled with good intentions, kidnap two women to be their wives. One of the heroes is a rapscallion, the other kind of a nerd. There is slap-slap kiss-kiss AND slow-burn. There is a horse who hangs out in the house. People’s faces get painted blue. It’s amazing.

So are her medievals. Wicked ( A | BN | K ) is a Taming of the Shrew story. Wild ( A | BN | K ) features a witchy, wildling heroine who nurses a knight back to health.  Wonderful ( A | BN | K ) is a battle of wills between a hero and heroine who are equally stubborn—and also beer-making. There is beer-making.

I know a lot of readers who have used romance novels as coping mechanisms, whether it’s due to chronic pain or the occasional blues.

Do you read to feel better? Which books are your “equipment for living?”

Comments are Closed

  1. Erika says:

    Romance novels for the win! This is the best blog post I have read in a long time. Thank you for sharing.

  2. kkw says:

    I’m so sorry you had such a lousy experience Elyse.

    When I’m really sad I read depressing books. Because it makes my life look better comparatively, and because it’s cathartic.

    For happy regencies, however, add in Heyer, Tessa Dare, Sherry Thomas, Courtney Milan, Loretta Chase, Laura Lee Gurhke, Sarah MacLean…it’s like a golden age of Regency. I know some people get sick of it but I don’t think there can be too much when it’s this good.

    Also, if you find hanged/hung problematic, allow me to recommend Blazing Saddles.

  3. Jessica says:

    I have tears in my eyes from reading this, and also all of the feels. This was such a very powerful post for me. I share your experience with doctors – it took ages, far too long, for me to get a diagnosis for gallstones, and I am currently struggling with a mystery ailment that makes me overheat/lose the ability to regulate my temperature at the slightest provocation.

    I have also had my own struggles with depression and anxiety, and getting diagnosed for that was its own special hell. I was unaware of my mental symptoms to a large extent, and only noticed physical stuff, and went through several doctors who thought I was drug seeking before one finally recognised what was wrong.

    Gerogette Heyer had been my comfort reading and companion through all of this – I go to her first when I am in need of comfort. The gorgeousness of her characters, her light touch with descriptions, the historical feel of things, and the knowledge that there will be a HEA. I must have read some of her books over 20 times.

    So snap to all of this, snap to doctors too often being arrogant uncaring arseholes, and snap to romance novels being equipment for living, for having got me through some of the roughest patches in my life.

    And thank you so so much for writing this. So so much.

  4. Bea says:

    Elyse, thank you so much for this post! It’s like reading my own experiece. I won’t expand on the attitude of most doctors and their lack of empathy and, most important, knowledge (at least one of them told me to suck up and get used to painkillers for the rest of my life). But to go to the heart of the matter, romance books also helped me to get lost in those wondeful worlds of love and emotional journeys and HEAs, and hold on to my sanity. Lately I added audiobooks for the times when migraines get out of hand.

    I share your list and kkw’s and then some. My own personal safe haven is Once in a Blue Moon by Penelope Williamson. I read that book more times than I can count. And when I want super crazy crazysauce Virginia Henley’s books are my catnip (thank you Redheadedgirl for reviewing Seduced, one of my favorites).

    Let’s keep reading romance! It helps the brain produce all those wonderful endorphines that make us feel so much better!

  5. Francesca says:

    It took them four years to diagnose my husband’s MS, during which time one neurologist told him that she didn’t have time to waste on what was probably a pinched nerve. Your story does not surprise me one bit.

    Edith Layton, Kathleen Gilles Seidel and Eva Ibbotson saw me through two strokes and breast cancer.

  6. Aly says:

    This post made me tear up. Thank you for sharing your experience!

    I also dealt with terrible health problems in my 20s, my doctors wouldn’t take me seriously and it took ages until I found someone who gave me the right diagnosis. In the mean time I developed panic attacks. In those moments of despair I clutched my novels and reading was the only thing that kept me sane.

    Some of my “equipment for living” novels are “Paradise” by Judith McNaught, “The Sugar Queen” by Sarah Addison Allen or even some Juliet Marillier (her books always have happy endings).

  7. I love this post, Elyse. SO MUCH empathy. I have M.E., and my stomach clenched up reading about your experiences waiting for diagnosis, because it all felt so, so horribly familiar. I’d always been a romance reader, but during that long, terrifying period when I wasn’t getting any diagnosis or explanation for why my body had suddenly given up on me (and I did end up losing my dayjob because of my illness), the only thing that got me through was binge-reading Georgette Heyers. I’m back to reading lots of genres again now, including romance, but anytime I fall into a real M.E. crash, I go straight to my favorite romances all over again – nothing else works nearly as well for comfort. And I’m going to check out all of your recommendations! (I love Villiers too.)

  8. Beautiful post! Thanks for sharing. I’m so happy that reading romance helps you feel better. Hugs.

  9. TheoLibrarian says:

    Elyse,  Thank you so much for sharing your experience. I’m so glad you have found comfort in your reading.

    I’d like to suggest Mary Balogh to those in need of comfort reading as well.  The past month of my life has been terrible (numerous sudden deaths among family and friends, professional disappointments, a reemergence of depression, etc.) but whenever I pull out a Balogh, it all feels so much better.  I wish everyone the very best of comfort reading!

  10. Barb says:

    Elyse,

    My heart goes out to you for what you have gone through.  I too, had tears in my eyes reading this.  There have been many stories about people suffering from unknown illnesses, and taking years to find out what is truly wrong with them.  Fibromyalgia is becoming more known now. 

    Though I have not gone through what you have, I have had some emotional times with work or losing friends, that only reading my romances enabled me to stay steady and sane.  Thank you for this post.

  11. Tessa Radley says:

    Elyse, while I don’t (thankfully!) have fibromyalgia, I’ve had all sorts of mis-diagnoses too, and I can 100% relate to your post! Thank you so much for sharing your journey. It touched me deeply.

    And this:

    “Plus, it affects women more often than men, and just like the Regency Mamas I’d read about, the medical community was happy to blame my symptoms on “nerves” rather than investigate.”

    Yes, that sounds absolutely bang on!!

    Tessa

  12. Patricia M. says:

    Reading romance helped get me through my breast cancer treatments.  I had to have chemotherapy and infusions for well over a year.  Sitting in that chair receiving toxic chemicals can be very stressful.  I always had a romance held tightly in my hands so that I could be transported somewhere else.  My doctor, who is a really compassionate guy, noticed the reading I did and probably would have prescribed reading too.  He certainly approved anything that would help me cope.

    I remember reading an article about Kasey Michaels, which is actually just one pen name she has used.  Her son was gravely and chronically ill so she spent a lot of time with him in the hospital.  She started writing her Regencies while in the hospital to help her cope.

  13. Pamela says:

    Thank you for this entry. THANK YOU.

    I, too, suffer from fibromyalgia, and I am weary of doctors and people in general who think it isn’t real and that I’m just a hypochondriac.

    Reading and writing romance is also my way of coping with it.

  14. Although I’d been reading romance novels on and off since my teens, I really got back into them during a bout of postpartum depression. As I tried to cope with sleep deprivation, hormonal weirdness, endless nursing sessions, and a general terrifying realization that I’d just altered my life forever, romance novels reminded me of the good parts of love and family. Later on, when I decided to start a freelance business, it was partly because I got it in my head that I wanted my own HEA: a happy family life, a work situation that left me in complete control, and as much flexibility as possible to pursue my favorite hobbies.

    I don’t have any specific authors to list here, but I normally went for historicals and paranormals during my low points, because those took me away as far as possible (I’m only now getting into contemporaries).

    So thank you for sharing your story. No matter how the media depicts us, romance readers are smart: we can, indeed, separate fantasy from reality; but we also know that words and stories can serve many purposes, including healing and inspiration.

    Read on!

  15. laj says:

      “I read romance novels. I read them because they are awesome, emotionally-wrenching yet fulfilling, and smart. I read them because I get closure at the end. There will be a happily ever after. There’s an answer, a solution. Life is full of ambiguity. I’d personally rather my fiction not be.”

    THIS.

    Elyse you rock! Your post is wonderful……thank you.

  16. Tamara Hogan says:

    Elyse – As a romance reader and writer who was diagnosed with fibromyalgia some 20 years ago, your story strikes a very familiar and painful chord. Prior to diagnosis, I experienced YEARS of untreated pain. YEARS of being told my problems were “all in my head.” YEARS of being treated like a drug-seeker. YEARS of being told a long competitive gymnastics career was the cause of my pain. I saw dozens of doctors, my hopes raised with each and every appointment. “Maybe THIS doctor might have an answer!” – only to have those hopes shot dead as a doornail each and every time. Until that last doctor, a young rheumatologist and chronic pain specialist. He diagnosed my condition, treated my pain, and helped me claw my way back to productivity and a decent quality of life again.

    Through it all, books – primarily romance novels – were, and remain, an important part of my treatment regimen. The ability to vicariously experience someone else’s life, someone else’s problems and joys? Navigate a completely different world? Experience the power of love, over and over again? Priceless.

    And thanks to ongoing self-care, treatment, and pharmaceutical help, I managed to find the strength and focus to write a few romances of my own – perhaps more slowly than I’d like, but that’s my reality, and I’ve found a way to make it work for me. 😉

  17. LauraL says:

    Thanks, Elyse, for your post. I also teared up as I have a degenerative arthritis that is moving fast and it also took me some time to get to the right specialist. Friends, family, and co-workers weren’t as understanding as they could be when I was having a hard time getting around. I was finally referred to a rheumatologist who took one look at me and my charts and sent me for x-rays. He has helped me manage the pain with physical therapy and the right pain meds. I am lucky enough to have a boss who understands there are days when I need to work from home or have a flexible schedule.

    And, same here, reading, especially romance novels, has provided the distraction I’ve needed at times. Re-reading Julia Quinn’s Bridgerton series in order got me through a bad time last Summer when I was recovering from an injury. I read some time ago that reading fiction for as little as six minutes can provide distraction to reduce stress. I think the bursts of reading I get while waiting for doctor appointments or between conference calls definitely help me get through the day by offering me some escape and the hope I get when I get to that HEA.

  18. Melissa says:

    This is pretty much my story except substitute FB for my diagnosis of focal point epilepsy. I cried more from relief than the actual diagnosis because, finally, after four long years of doctor appointments and worsening condition, I was deemed not “faking it.” All along, I had my dear Nora Roberts and JD Robb books with me.

    Thank you Elyse for putting into words what I wanted to scream to every doctor who ever dismissed my symptoms as “nerves.”

  19. SaraLC says:

    Great post.  A few years ago, my son was born unexpectedly at 25 weeks (15 weeks early).  While he was in the NICU, I read only romances and instructional preemie books.  Particularly in the first few weeks when we weren’t sure if he would live, I had to read books where I was assured of a happy ending to take my mind off of our own uncertainty.  The children’s hospital had a parent book exchange set up in the family center and the majority of the books were romances, so I am guessing that many other parents felt the same way.

  20. Kim says:

    Thanks for sharing your story I think some doctors jut don’t like admitting that they’re stumped on a diagnosis. When tests fail to reveal a clue, it’s easier for them to believe it’s psychosomatic. I’m glad you finally found a doctor that could help you.

    I like to read books with happy endings when it’s been a particularly difficult day. A good book is a wonderful de-stresser.

  21. Megan says:

    THANK YOU! You nailed it. “He explained to me that my story is typical, his patients are dismissed and brushed aside and generally eye-rolled at because you can’t diagnose fibro with a blood test or scan. You eliminate other factors.”

    I also have fibromyalgia. It took about 18 months for the diagnosis. Since then I have tried multiple medications (all fails – some with very bad reactions), and have had other maladies creep in etc etc – you obviously know the drill.

    I too escape through reading. I used to read lots of non-fiction and “serious” literature. Doesn’t do it for me anymore. Romances are it – I find everything I need there – wonderful writing, epic stories, and an ending that feels good and right. Thanks to your wonderful reviews and Sarah and her damn sales tweets – I have read some incredibly wonderful books.

    Thank you for sharing your story and thank you Elyse for putting into words the horrid experience of being dismissed and demeaned and treated like shit for being ill.

  22. theo says:

    Anne Gracie’s Perfect series, especially Perfect Rake, has seen me through so many, many problems.

    I’m sorry it took so long for you to get a proper diagnosis. Too many doctors don’t want to be bothered and after working in the medical field, it infuriated me even more to see that. But there are still those who enter the profession because they really do care, not because they want the title to match their ego. I’m glad you found a doctor who cared enough.

  23. aphasia says:

    I also buried myself in a deluge of regencies in the couple years after the onset of my fibro. It’s also when I discovered this site! Nowadays the symptoms are under control and I don’t read as many romances, but I will always be grateful for the escapism when I really really needed it. (Also for the existence of my Buffy DVDs.)

  24. MissB2U says:

    “A doctor had just prescribed me books motherfucker.”

    Great post.  I think all of us should send a big, fat thank-you note to your rheumatologist! Docs like him deserve all the positive feedback they can get.

  25. Holly Gault says:

    Thank you, Elyse!
    Recently my husband and I went through an extended crisis involving a couple of bureaucracies and the long waiting periods between notifications. I left town. At least, I left emotionally and read all three of Robyn Carr’s series in the Pacific Northwest—27 books. It was life saving.

  26. JacquiC says:

    Great post, Elyse! 

    Books have been my escape since I was about four years old. As a shy kid, with a club foot, and often perceived (incorrectly as it turns out) to be incapable of doing things that other kids were doing, I spent HOURS curled up on my bed reading anything and everything.  I discovered romance novels as a teen, was ridiculed for this reading choice by my very academic mother, so read romance surreptitiously for a long time.  Then I came back to it as a much older adult and find reading to be a perfect escape when life is stressful, sad or when I just need a distraction from the craziness around me.

    I have a folder on my Kindle entitled “Comfort Reads”.  Most of the time I remove books from my e-reader when I’m finished them, except those that I identify as potential comfort reads.  I have Meg Benjamin’s Konigsburg series in the folder, all three of the Kleypas Travis books, Pride and Prejudice, Dorothy Sayers’ Gaudy Night and Busman’s Honeymoon, and a few others that I can’t remember now.  As a child/young adult, it was Anne McCaffrey and Pride and Prejudice (which has real staying power for me!).

    I am appalled at how long it took you and so many others on this board to get proper diagnoses.  The medical profession really has something to answer for…

  27. MA says:

    Reading gets me through too…the nights when my child was screaming in pain, the days and nights when I am beyond bone-tired and in so much pain I no longer have energy to cry.  My stress and pain levels are rising again, and I have realized that at times like these I need romance that makes me laugh.  Well, Terry Pratchett will do the trick too, but HEA with lots of fun is what I need to get through.

    As for the doctors…what I have not experienced, I have certainly heard from my mother’s experiences.  It’s soul-sucking to go through that.  I’m glad you had books to help you through.

  28. Mag says:

    A great post.  I started exclusively reading romance when my mom was diagnosed with lung cancer.  Life was too sad to add any more sadness.  I can absolutely relate.

  29. Oh, Elyse, I am so sorry to hear this.

    I’ve had many of the same issues you have. I’ve been treated by great doctors and lousy ones. That diagnosis, that name, it’s like a choir of angels suddenly start signing, even if there’s no known cure for what you have. Naming an issue is so incredibly powerful.

    As well as physiological problems, I suffer from a type of depression called “double depression,” which is fairly common. The anti-depressants take care of some parts of it, but when the chemicals in my brain refuse to cooperate, only my books and my dogs keep me going.

    My own choice of happy ending tends to be contemporary if I am severely depressed. And I like thrillers because they get my adrenaline flowing when I am really sluggish. But books have always saved me, and I am so glad they have done the same for you.

    Keep on keeping on.

  30. Joy says:

    As a medical librarian I know that like all people in a profession some are better at the diagnosis part of medicine than others.  And the problems with preconceptions clouding diagnostic judgement are well-known (just as we all too often label others on first meeting them as nerds, spoiled princess, dumb jock, boring girl/guy next door, etc.).  Too often a challenging diagnosis without clear physical tests is WAY down on the list of possible diseases.

    You were so right Elyse at getting into the hands of a good rheumatologist.  Of all the medical specialities they are top of my charts for smart careful diagnosticians.  So many autoimmune disorders and odd hormonal conditions are finally caught by them.

    As for reading, we librarians call it bibliotherapy.  Too often we’re so caught up in helping explain complicated medical terms and tests to patients and helping medical professionals with research that we forget our long history of connecting suffering patients with books to help them forget their illness and cope.  Too often coping as a necessary skill to battle disease is forgotten in our technologically focused care.

  31. MD says:

    Elyse, I am so sorry to hear this. Thank you for writing your beautiful piece. My doctors, too, tell me that I am “always reading”. In my case, in doctors’ offices it’s a lot of scientific papers, because I need to keep up with work. But romance, too, is part of my “equipment for living” – the stress relief I desperately need at the end of the day and on weekends. Also, while travelling, where pain and discomfort can be a major issue.

    I, too, have gone through several years with undiagnosed pain, at around the same age as you, and your story is very familiar – suggestions of “depression”, “stress”, “you just need to stay active” etc., and actually being written off as “psychological management only”. I was more fortunate because I had an underlying physical cause, eventually diagnosed and treated by an amazing physical therapist. But it took a long time to get there, and then more time to get my original doctors to recognize that the diagnosis was real and reversing the “no physical cause” label (and yes, it was confirmed by “traditional” medicine eventually, though they first resisted the “not likely according to evidence based trials” suggestion). So I am sorry you had to go through all this.

    I found that romance and other “lighter” reading was really important for keeping my stress level down and getting through temporary flare-ups of pain and related problems which happen several times a year (which can also drive up anxiety and depression). Much better than pain-fueled sugar overeating, which I do not recommend! Even now, when my pain is much more controlled, I still find it an essential rest and relaxation tool. I hope you continue finding the books to help you through.

  32. Erin Burns says:

    So much THIS. I don’t have fibromyalgia. What I do have is severe Delayed Sleep Phase Disorder and RLS. I can’t even tell you how many doctors insisted I wasn’t sleeping because I was depressed and that it was all in my head. Eff no, I was depressed BECAUSE I wasn’t sleeping. When I finally found a doctor who knew what the hell was happening I sobbed. But in all those nights of not sleeping, at least I had all my old friends to keep my company.

  33. Susan says:

    I can sympathize with you, Elyse, and so many others here.  I’ve struggled with several autoimmune conditions (lupus, Sjogrens, LSA, fibromyalgia—which, predictably, took years to properly diagnose), as well as the lifelong effects of a devastating car accident.  I have to say that during my darkest period I was virtually unable to read anything at all.  Between work, acting as primary caregiver to my parents, and dealing with my own health issues, I rarely had enough additional attention span to focus on books.  It was when I began to get my feet under me a bit more that I returned to reading, although my reading habits did change.  Whereas I still read a lot of non-fiction, I’ve largely replaced mysteries with romance and SFF.  I don’t think I ever quite made the connection that you so beautifully articulated:  I’ve needed the solace and hope that these genres provide.

    Thanks for sharing this thought-provoking and uplifting post.

  34. Thank you for the wonderful post, Elyse, and everyone, for sharing your experiences in the comments. The romance community is filled with such strong people, and sometimes it really helps to recognise your/our courage.

    Recently I’ve found Shelly Laurenston/GA Aiken’s books are fun, kick-ass mood sustainers. No, I know they’re not regency. Oops. Georgette Heyer is fab. Also Amanda Quick/Jayne Ann Krentz.

  35. sarah says:

    I have a different story, but so much of what you’ve said resonates with me.

    I came to romance novels when I turned in my dissertation and my brain refused to function any more. Laura Kinsale, Loretta Chase, Julia Quinn—thank you! They took me by the hand and entertained me with stories I didn’t have to analyze, critique, or mull over—I could just ENJOY.

    Now I’ve stuck with romance through four years and counting of infertility treatments. I won’t lie—this is not always the greatest genre for someone in my position. I never read epilogues anymore because babies-ever-after make me MAD… and sad… and so often are just WRONG on so many levels w.r.t. How Fertility Works that it makes my head hurt—but there’s nothing like sitting in a doctor’s. office at 6:30 in the morning hopped up on crazy-making hormones and waiting for a vaginal ultrasound to make hanging out with Villiers just *the* *greatest.*  Can Eloisa James get a commendation from the psychiatric establishment?  Because she’s helped me more than hundreds of dollars of therapy [except for a babies=love epilogue here and there…  for which I forgive her because apparently they are required. Can we just ban these?  They are the worst.]

  36. mariab says:

    I wanted to shout HaBo! before I was a couple of paragraph’s in.  I read lotssss of regency’s for the same reason and was having a giggle fest about Darcy rising from the bath water, like venus d’ milo on the halfshell. 

    My niece is twenty and an english major and says she just can’t get into Jane Austen and I wanted to cry.  I was thinking about giving her the Briget Jones because I remember laughing out loud while camping, another thing besides reading I do to “pick me up” and having the other campers dying to know what I was reading.  I think I might start her with Colin & Elizabeth, then get her to read Jane, then share Bridget with her.

    I think like you do, its glorious entertainment and comfort and there for us day & night no matter what’s going on.  I’ve already given her the spiel about having girlfriends, and keeping girlfriends who know you (for your lifetime) as a short cut to helping you through the tough times.  But your post on having book-friends is just as important, for the same reason.

    Stay strong Elyse, you can be the spokeswoman for us anyday.

    PS Edith Layton & Barbara Metzger are two of my favorite re-reads,

  37. Kelly S. says:

    I’m glad you’ve got you illness under control.  It sucks that doctors are so dismissive.

    My go to authors are Jenny Crusie, especially Bet Me and Welcome To Temptation. Tessa Dare is excellent! I love her sense of humor.  Jill Shalvis & Eloisa James are at the top of the list too.  Also, I’ve had the great fortune of meeting all of them in person!  The perk of being a librarian.

    I will admit that when I’m sick, I watch tv.  The shows lately that cheer me up are Leverage & Psych.

  38. LauraL says:

    @ JacquiC – I have to borrow the Comfort Reads folder idea from you!

    I thought of you all, Elyse and everyone, today while I was reading my Kindle at the orthopedic doctor’s office. I laughed out loud at Julie James’ It Happened One Wedding while sitting in the exam room right before I got the news my arthritis nodes evidentially have been getting busy in my hip joints.

  39. Alexandra says:

    Thank you SO much for sharing your story (and your awesome recs, which I will be checking out ASAP). It really resonates with me because I watched for seven years as my mother struggled with various health problems. She was in her early forties at moderate risk for heart attack and stroke, her thyroid failed, developing severe allergies and she would regularly get migraines that wouldn’t allow her to move without vomiting – and often couldn’t get rid of them without a trip to the ER.

    Despite all this various doctors she saw all told her the same thing: lose a few pounds, that she was just a woman complaining she had something beyond chronic migraines…and then they threw medications at her. She tested negatively for Lyme’s Disease in the Lyme’s equivalent of the strep throat ‘quick test’. They refused further testing due to costs. She finally had to find a Lyme’s specialist on her own to give her the test and confirm the diagnosis. That was more than five years ago. She’s had it for too many years now to get rid of it completely so she has to fight a disease that will slowly continue shutting down her body…when it likely could have been prevented by someone who listened to her instead of assuming she was just a woman with imaginary health issues. It doesn’t surprise me that the doctor who finally referred you to a specialist is a woman.

    All that aside, I’m very glad you were able to get the treatment you need. My reasons for reading romance are like yours:

    1) Life is full of ambiguity. I’d personally rather my fiction not be.
    2) Yes, romance novels come HEA guaranteed, but it’s not about the end, it’s about how you get there.

    Thank you again for sharing.

  40. Wow, Elyse. If I could reach out and hug you…

    This is the feels right here.

    It’s also really trippy. Today is the 6th anniversary of when I had to give up working because of fibromyalgia. I was 28, too. And I’d just been diagnosed (and since with CFS and adrenal fatigue). It used to be, “You’re too young.” Now it’s “How did you manage to keep going for so long?” (Too much irony in all of it.)

    Hearing the diagnosis is the most bitter sweet thing – it’s proof, but it’s “what now?” at the same time.

    I always tell people romance novels are like a shot of oxytocin that you can’t build a tolerance to. Like falling in love over and over and that helps manage pain better than any of my prescriptions. There’s enough to stress about, grieve about, agonize over in my own life. I’ll take a side of light, thanks. I do it with books, I do it with TV, I do it with music. There’s enough uncertainty. I’d like to know things will end up okay.

    It’s also why I started writing. It took forever because of all the disease stuff, but it was so worth it, getting to write my own love story (or more accurately 60 stories, as it’s a choose your own adventure inspired by dating culture, which is another reason it took so freaking long).

    And while I did it to keep myself sane and entertained, I ended up turning down two big publishers to launch it myself last month. Figured, yes, I’m crazy, but I’m crazy and more productive than I would be. And maybe it’s a new chapter.

    Good luck to you – thanks for sharing your story. Be well!

    Tara Lee Reed

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