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.
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.
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?
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.
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.
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.
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.
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.
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?”
Thank you Elyse, I can’t even imagine the pain and desperation you went through. We need more doctors who are not afraid to say: “You have something, but I don’t know how to identify it, so go talk to this person.”
All I learnt of emotions and feelings as a kid, came from books. I was raised in logic. Emotions were just pesky things that did not help to solve problems and were therefore considered a waste of time/energy. Intelligent people should make them disappear, and focus on the importance of doing stuff the right way.
Fortunately for me, reading was always a plus. So I read, on and on, and then I’d get stuck for days, figuring out why that scene touched me, or why that one line got me bawling my heart out. That was how I started being able to identify what I felt and why I felt it.
Thanks you for sharing this with us, Elyse. I’m so sorry that you had to go through all that, but I’m happy that finally, finally, you were able to figure out what you have; I understand how that can be such a relief! I’m glad that romance was there for you; that, too, is something I understand very, very well. Without my romance novels, I would have been taken away in a pretty white padded van years ago . . .
So thank you for sharing, and though it make sound odd, considering the pain you went through for years, your post was so beautifully written!
Enjoy,
TBQ
Beautiful posts and comments. Reading in general helped me survive my childhood and reading romance has helped me navigate many trials of adulthood.
I have so many feelings, I don’t know where to begin. Many of my favorite comfort reads feature the h/h helping each other heal from past trauma and/ or make peace with tgeir families – A Summer to Remember by Mary Balough, Bet Me by Jennifer Crusie, Love in the Afternoon by Kleypas, Deception and Absolutely, Positively by JAK, A Soldier’s Heart by Kathleen Korbel, Between Saints and Sinners by Marie Sexton, to name a few. It took me *years* to realize why I, a survivor of CSA and a seriously toxic extended family, needed that type of story – because they give me hope.
Doctor visits tend to trigger my ptsd. I always go in armed with a romance (and chocolate) – I really resonate with that. Thanks for writing this Elyse.
Wow, Elyse. It’s difficult to put into words how happy I am that you finally got your diagnosis. I can empathize with your situation because romance was my savior. I was battling un-diagnosed severe depression in 2011 when I started writing my first novel. That romance story sustained me, kept me afloat until I finally saw a doctor and started on daily antidepressants. I’m much better now—and still writing and reading romance. So three cheers to happily ever afters!
Thank you so much for sharing Elyse!
Everything you have said I can completely relate to and it’s like you have given a voice and words to everything that I feel (which is so very helpful as constructing words and voice and explaining how I feel is not something that comes easily to me). I’m at a similar point that you went through – having no diagnosis for feeling so much pain as a 29 year old and wondering if it really is just in my head. I’m now wondering if i will get diagnosed with the same syndrome and I am awaiting an appointment with a rheumatologist so fingers crossed I will know soon. I guess I have been lucky in that no doctors I’ve seen have been dismissive – just stumped.
Anyway just wanted to say how much I appreciated your piece. As much as I would never wish this on anyone it is comforting to know that there are others out there if only to reinforce that it is not in my head.
I read every word of your post and ended up with tears in my eyes. My own medical condition in no way compares in severity to yours (I have migraines) but I also have a husband whose heart disease and the accompanying stress has ruled our lives for years. I too read romances to keep my sanity and equilibrium. I echo your reasons for choosing this genre and thank you for sharing your experiences so eloquently.
I have Hypokalemic Periodic Paralysis. The pain with it can be off the charts insane. Sometimes it goes past my level 10 setting for pain and I can no longer feel the pain at all. I just faint when I try to stand. My body just gives up.
I have decades of bad interactions with doctors telling me that I am making up my paralysis and pain due to a childhood trauma I never had. I had an incredibly good childhood compared to the average person. My only childhood trauma incidents had to do with random attacks of severe weakness whenever I tried to do sports.
I have been reading Romance novels since I was a pre-teen. They have been excellent in helping me get through the bad pain days. Although I typically like to read Sci-Fi/Fantasy novels more, they are too difficult to read if my pain load is 8 or higher. I always find it upsetting that my IQ drops like a rock when I am in pain. I am just spending too much brain power managing the pain load.
This is the best post i’ve read all week. Romance novels are excellent, damn it, and who cares if we all know how it will end? It’s in the details. And about enjoying how you spend your time.
It also made me think of Monty Python: “I’m sick and tired of being told I’m sick and tired!”
I echo everyone else in saying that this post is WONDERFUL. While I don’t have chronic pain, I suffer from depression and anxiety and romance novels are often the little simple bits of joy that get me through tough times. I feel like Romance novels are so maligned in popular culture that I sometimes feel like I need an excuse or apology for reading… but they make us happy. Isn’t that what all entertainment is supposed to do?
I too live with chronic pain and have been chided by my best friend for looking for escape in romance novels. I too once looked down my nose at them, but I’ve come to realize how much they deal with real life issues.
While I do not have fibromyalgia, I have other health issues and am seeing some improvement as I switch to the Paleo lifestyle. I share this article because I wish you well on your journey and just in case this info might help you:
http://chriskresser.com/is-fibromyalgia-caused-by-sibo-and-leaky-gut
I’ve been a long time lurker here, but felt compelled to post and say how much I adore this post. I had a similar (though not quite as difficult) experience getting my fibro diagnosis. The not knowing really is the hardest part.
And, WORD to romance novels being excellent therapy. I read a bunch of romance in my early teens, but then wandered away from it. I had a stressful year last year, and it pushed me back into romance’s heaving bosom (I know – sorry!). I’m a sucker for old school crazysauce romance, but Elizabeth Hoyt’s Maiden Lane series got me hooked on the new stuff. And, I’d never kick Mr. Darcy out of bed.
Again, loved the article – thank you for sharing your experience (and your book recommendations).
I shared this on tumblr because it was important. Thank you, Elyse.
Yes, yes, yes!
Different medical problems, similar problems getting several diagnoses (?). I still remember with glee the look of shock on a consultant’s face after he (it would be of course) had given me the ‘bad’ news my fallopian tubes were more like a string of sausages one side and a length of rope the other than two tubes and my response was ‘that’s fantastic!’. I was so relieved it wasn’t all in my head, that what my body ws telling me was true.
For me Mercedes Lackey has been a reliable distractor over the years, especially as not all her protagonists are youngsters, not all of her books are romances though most have romantic elements, but they work for me. Probably at least in part because the ‘happy ever afters’ rarely involve children and even when they do the children are very much peripherl to the action.
I was ‘fortunate’ to be diagnosed with endometriosis when I was 15 (only because it takes an average of 9 years to be diagnosed), during my 2nd of my operations. I had operation #12 in March this year, and #13 is going to be Monday next week.
Sometimes i feel fine, and others I am just overwhelmed with pain. I like to curl up in bed with Jane Austen, Georgette Heyer (regencies and mysteries both), Ngaio Marsh mysteries (always a good dollop of romance in them), and some more contemporary writers such as Jenny Crusie, Nora Roberts, quite a few Australian authors I have been reading lately, and authors I find rummaging around on the e-reader site.
Sorry to hear about your diagnosis woes! I was lucky to fall in with an excellent rheumatologist at 16 (wow, I can’t believe it’s been that long), who diagnosed me with lupus. I was under control for the most part until I caught a terrible flu that set me off, and ended up with kidney failure and dialysis by 25. My kidneys decided they wanted to start working again with some very expensive medicine, but I cannot work and have some pretty nasty social anxiety now. My coping is to listen to audiobooks and knit. Knitting is a soothing hobby, and I get to use my brain for something useful.
I am kind of indiscriminate when it comes to comfort reads, except that I prefer they come in audiobook form. Kim Harrison’s The Hollows series is a favorite, as is Jim Butcher’s Harry Dresden. Sarah Dessen’s YA are all amazing, great for a comfort read. The Bridgerton books are excellent, and I just like series Regency in general. Pride and Prejudice and Persuasion are also great.
@Katie Lynne—yay for knitting and comfort “reading” (a.k.a. listening) at the same time. It is one of my favourite de-stressing strategies. I am developing some specific tastes in audio series/narrators.
Wow, Elyse! This is such a wonderful post. And it’s the sort of essay that really just might change somebody’s life, someone who’s been to 19 doctors and can’t find the will to phone up #20.
Sorry you went through all that sh*t, but you rule. Seriously. Rule.
Thank you all for your wonderful, supportive comments! I wish I could reply to you all individually.
For those of you who faced a similar battle finding a diagnosis or just coping with a chronic condition, you have my sympathy and my admiration. If I’ve learned anything from my experience it’s to never stop advocating for my health, even if it feels like endless doctor shopping.
And hooray for HEA! The power of a good book can be truly transformative and healing.
Also—YES! knitting! I also find it to be very soothing and I have about twenty projects started.
@Gloriamarie, I’ve just started a similar diet. Fingers crossed that it works!
This was a great post! I have Crohns and I definitely use romance novels as anti-depressants and pain relief. Susan Elizabeth Phillips just got me through another colonoscopy!
When I was first diagnosed I was always stressed about losing my job and in the long months before I was diagnosed I doubted myself and was shamed into thinking “maybe I AM making this up!” more than a couple of times.
I recently started seeing a new doc when my old one retired and he said “the bad news is that you’ve got Crohns” during our first appointment. And, I mean… obviously I knew that. I’ve had the diagnosis for more than 10 years, but I almost got a little teary-eyed because it was so reassuring. Listen, I would greatly prefer not to have it. But it was just such a terrible journey to get to the diagnosis that I’m still always worried that someone will try to take it away from me!
All the best!
http://robbwolf.com/2013/02/11/healing-chrohns-disease-feel-absolutely-normal-time-10-years/
I too read regency romance to get through tough situations. Julia Quinn and Eloisa are my top two girls. Nothing like a stolen kiss or some regency smile to take the edge off and give you the strength to battle things head on . So glad to hear I’m not alone.
Thank you! I’m not as eloquent as some of the other commenters…so just thank you for sharing! All you romance writers out there….keep writing! We need you and your books!
I can identify so much with all of this. Not just for my fibro, but for my mental health as well. I’ve been diagnosed with a few things, but the tl;dr is SUPER ANXIETY and major depressive disorder. There are times when I cannot leave the house (having a work from home job has exacerbated this, so guess who’s job hunting?) and the two things that keep me sane are the Internet (human interaction without the humans) and BOOKS BOOKS BOOKS. Romance, primarily, because you’re so right, it’s not about the destination, it’s about the journey. So many of my tribe (are you famliar with the Bloggess? We call ourselves Lawsbians) says the same. Entertainment, for us, is more than a luxury, it’s treatment.
This was a really great blog post. I was Diagnosed with Fibro a few years ago and now only recently diagnosed with Chronic Fatigue books and my knitting are my comfort for sure. And when my days are really bad and I can’t knit my books are the greatest comfort, I’m glad I’m not alone
I just wanted to say thank you, a huge huge thank you for writing this. Your story echoes mine with the chronic fatigue and the chronic pain and the fibro. and the complete lack of any sort of diagnosis and being told repeatedly that it’s all in my head. And romance, particularly regency romance saved me in so any ways. So thank you for writing and sharing and putting it all so eloquently. I also highly recommend Julia Quinn’s books, her Bridgerton series is another one that pulled me through some awful moments.
Thank you again.
Oh my gosh!!!!! I was in your exact same boat so to speak 21 years ago. Mine was severe abdominal pain and chronic diarrhea. First few docs said it was a bad stomach flu that I just couldn’t shake, then I was told it was parasites that they couldn’t find. Then doc number 10 told me it was all in my head. At work the rumor mill said it was Aids, although at that point I had been married for 10 years and he was the only man I was sleeping with and I was the only woman he was sleeping with. I finally had to stop working due to the pain and fatigue. After 18 months of the never ending pain and weighing only 72 pounds I went to my OBGYN to beg for pain meds. Well he wouldn’t let me leave his office, he took one look at me and slapped my butt in the hospital. That’s when the new GI doc showed up. My sister thought I either had Crohn’s disease which I had never heard of or leukemia, so that’s what I told him. He tested me for leukemia which is a blood test and at the same time tested my SED rate, which was off the charts. Long story short, yup I have Crohn’s, three years later I was diagnosed with rheumatoid arthritis and 7 years later I was diagnosed with a rare skin disease.
Like you I started reading romance novels, lots of them. It was a way to get out of my world for a bit and redirect my mind to something other then the pain. My husband got me a Kindle reader when I got a rare eye condition so I could change the font so I could continue to read. I had to give up needle work due to my arthritis and eyesight. I had to stop working because of all the combined conditions. My husband encourages me to read. This is not the life I had planned but it is the life I have been given, so I deal with it as best I can and go to Regency England often!! Happy reading!!!
Wow!! Absolutely loved this. I can totally relate. I havent had the medical issues but definitely use romance novels as mt escapism. I was in an emotionally abusive relationship for years and read about a book a day. Everyone thought I was crazy and needed to live in the real world. At the time I couldnt explain the need to read so much I just knew I found my only form of happiness in the live stories I read.
Nobody knew the ins and outs of my marriage. I had isolated myself from family and friends so much that I just became the weitd recluse who reads too much.
Now that the relationship has finally vome to an end I can see clearly now. I needed to know that there were good men out there. I needed to feel love. The only thing that gave me that feeling was living it through the heroines that lived in my pages and my mind. I am thankful everyday for that method of escape. It would have been so easy to use alcohol or some other bad substance to let go of the emotional turmoil I was faced with everyday, but I chose books. And I am forever greatful to all the amazing authors that saved my sanity during those dark years.
Thank you for sharing your experience. It is good to know you aren’t as crazy as everyone thinks you are!
Thank you for sharing your story. I can relate too many of your experiences. One of the rheumatologists I went to see told me that the pain was all in my head and I should get treatment from my psychiatrist. My psychiatrist told me the rheumatologist was nuts. For Regency books I love Georgette Heyer, she also wrote some great mysteries. My favorite current writer of Regency is Mary Balogh. I highly recommend that you check her out.
One of the best blogs I’ve ever read. Thank you, Elyse for sharing your story.
Romance novels have been my equipment for living as well. When my mother died unexpectedly at the age of 53. When my beloved husband suffered a devastating stroke, robbing him of the ability to read or speak and casting me into the role of full-time caregiver for five years before his death. When my wonderful father was diagnosed with cancer and given four months to live three years later. During all of those grief-stricken, stress-filled experiences I was never without a romance novel close to hand. When my husband lay unconscious in a critical care unit for five weeks before dying, it was Teresa Medeiros, Christina Dodd, Jude Deveraux, Jo Beverley, Julie Garwood, Jayne Ann Krentz/Amanda Quick, Susan Mallery, Debbie Macomber and countless Harlequin authors who kept me sane, soothed my soul and gave me hope.
SAVING GRACE by Julie Garwood is the one book that never fails to make me smile, laugh, cry, sigh and remember why I love these books so much and why they always bring me hope and joy, regardless of what’s going on in my life at the time.
Elyse:
Your story is inspirational, and touches so many people on so many levels. I don’t have a chronic illness, but I understand chronic pain. Nearly two years ago, I mucked up my knee. Turns out it was congenital defect that suddenly got worse due to strain but it changed everything… I was reading romance novels for years but being in pain and with no good answers changed everything and I was reading more than ever. Although nothing is really resolved reading romance gets me through the day, I especially love either reading on my ereader or listening to romance audiobooks when I am trudging my way though exercise on the treadmill. Now I am using romance to take charge of my life; I started writing reviews and I’m beginning work on my own books.
I love your line about literary fiction being “obnoxious and pretentious” and I agree. So many people ask me all the time why I read “fluffy” romances instead of “good” books. I always tell them the truth, that what they consider a “good” book usually bores and depresses me (the last “good” book I read, The Poisonwood Bible, pretty much doomed the genre for me) and I need the happy ending.
May there be a HEA for all of us.
Your fibromyalgia story could be mine. If you substitute Regency with Paranormal. It is terrible that we suffer so much and are dismissed so frequently. Keep your chin up, I went 20 years before diagnosis and am now 5 years since. Life is better, so much better
You pretty much wrote my story. Except that I have Lupus, and had a Tubal ligation and Gallbladder Operation without ever using pain killers.
I took my friends out to dinner the day I was diagnosed with CFS. The RELIEF! But I was very lucky with my doctor who believed me right away. The fact that she was a former nurse was a big factor or so I have always left.
I read mysteries and fantasy/SF. But the really hard times call for fanfic. Or my old reliable Georgette Heyer.
I want to print this off, and give it to all the people who tell me I I “read too much trash” and I “just need to be more active”, along with a bunch of other … whatever. I have trigeminal neuralgia, in my case caused by a herpes virus infection of the nerve – it’s not POST-herpetic neuralgia, because there is no POST, or AFTER, about it. I take drugs, we’ve killed the middle third of the nerve (my dentist decided to do a shot for recent work, “just in case” rather than because he knew it would hurt”, and it still sets off like a tazer through my face when it decides to. It took 4 years to diagnose, during which I got the same wonderful type of diagnoses as you – those looks that clearly mean you are nuts, attention-seeking, drug-wanting.. I finally had to quit working. That leaves a lot of time to feel, but I don’t really feel very good. I read just about anything with a happy ending, but prefer Regencies, Shifters, and modern day romance. I love them, need them, And I am most grateful for your eloquently worded explanation.
Your beautiful post reminded me why I write and read. Thank you for sharing. Your strength through all the crap you went through is an inspiration, and I see you still have a marvelous sense of humor and irony.
Several years ago, my husband was diagnosed with end-stage rectal cancer and had 18 inches of his colon removed. (I know, gross.). The doctor, fortunately, made a mistake. I cried though an Anne Gracie book (Gallant Waif) while he was drugged up and I thought he was dying, and then The Rose Garden by Susanna Kearsley a year later when he was back in the hospital getting everything reconnected. I’d never “needed” books before; I just read. But those two times in my life, I needed books, and they came through for me. Anne and Susanna can do no wrong.
I have a book case I call my prozac shelf. I don’t always consciously choose to go there, but if I find myself reading them, I know I’m stressed and at risk. On the shelf are all my Georgette Heyers and my golden age mysteries from Christie, Wentworth, Sayers, Marsh. Also the complete Ellis Peters Cadfael mysteries. You may ask what this has to do with romance, but they all have a complete romance in them.
I think one of the key things in the selection is that none of those worlds are real. They are a complete and totally safe world in which everything comes out right at the end. There is nothing in them to bring me back to present day reality.
Wow, Elyse…it’s like you lived a chunk of my life. I was a competitive figure skater until I was 17 years old. At 16, I had yet another skating injury, wrist tendonitis, but it wasn’t going away. It then went to my left wrist, and over the next 4 months went throughout majour parts of my body. While this went on, I experience head pains that would bring me to my knees. After giving up skating to concentrate on my last year of high school, the pains were unbearable and I did much of my schoolwork at home. Tests, pleading with doctors, being ignored, and the phrase that stuck me the worst was “It’s all in your head.” Yes, that’s right. The headaches are in my head. Now if you could fix them and give me my young athletic body back, I’ll be happy to leave.
A rotten year later, I heard from a muffled unbelieving voice that I had been diagnosed with Fibromyalgia. My “old English” doctor didn’t believe it, and I left unfulfilled and questioning what it all meant. Within a month, a neurologist told me I had “common migraines” which are bad headaches every day. Medications came and went over the next several years, little relief, and ulcers became my painful friend in my stomach. Needless to say, I sucked up the pain, got a job in retail, and became an insufferable workaholic for the next decade.
Age 29, I got married, pregnant with my daughter, and learned that the pregnancy was not a fan of Fibromyalgia. Most wonderful, and yet painful time of my working life. My daughter is about to turn 13 years old in a week, and I have spent that last decade of her life in constant pain, limping, crippled up some days, and have now been diagnosed with my third type of migraine. There isn’t a day that goes by that I don’t love the strength this pain has given me to become the strong person I am, but I hate it for denying my daughter the pleasure of running, playing, and some days even hugging without discomfort.
I have led a great life up to today, and I wouldn’t change anything because of what I might lose if I did. I’m a divorced single mom who homeschools my daughter with epilepsy. But I have give my daughter the love of reading, books, and writing as well. The adventures through the words on a page can give you the intelligence, emotions, and strength to make it through another bout of pain or depression. It is in many ways a prescription that can be filled infinitely and used as often as possible. I thank the books that I read, the authors that I review for, and the blog that I write that allows me to stay in the comfort of my home with pain and depression, but I can still make differences to my daughter and the people I connect with online. Never has reading and writing meant so much to me than now, when disability comes knocking but it doesn’t have to rule my every moment.
Thank you so much for this post. I think it’ll become a post of my writing blog. Much love and healing thoughts.
I’m coming to this super late…
Anyways, the part about ‘enough blood draws to feed the cast of Trueblood’ really resonates. I don’t have a diagnosis yet, but every time I see a new doctor they want blood. I had blood drawn in a waiting room once. And all they’ve ever found is that there’s nothing wrong with my blood. Also the part about pain. I dislocated my thumb once in a shop accident (and then relocated it myself, which I’m going to keep bragging on for the rest of my life.) I got ice on it quick and all, and in general it went as well as such a thing can. But still, I kept waiting for crazy pain. And it didn’t happen. I routinely get menstrual cramps worse than that (leading to my possibly unhealthy relationship with ibprofen).
I had an intestinal candida yeast infection as a young teenager, basically chronic nausea and vomiting. One of the early phases looked like morning sickness. I had never kissed a boy before. It seemed terribly unfair. After most of a year of ickiness I eventually had to go to a holistic practitioner to get it diagnosed. My regular doctor of the time never believed it, implied the treatment I was getting was working due to placebo effect. I remember thinking, It made the vomiting stop. Bitch I’ll take it, placebo or not. I still can’t eat sugary stuff without risking the ‘ol trick stomach.
At 20 I got sciatica. I was able to treat it with physical therapy and avoid surgery, but for a little while I could barely walk. I still have to manage my back and deal with periodic flare ups.
In the last few years I’ve been dealing with bouts of insomnia and what has been described by a doctor as ‘chronic fatigue like symptoms.’ I hope to get on doctor hunting soon, I’ve been stuck fighting with the system to get insurance for several months. It’s intimidating and depressing to deal with, especially when I’m often so tired. I really appreciate reading everyone’s stories. It gives me hope, that it’s worth it to keep searching. And now I’m tearing up like a big ‘ol softie.
And I too have been reading more romance. It’s magnificent for the days where I just want warm and fuzzy, stories about beauty and connection and everything working out in the end. And also sex. One of the biggest reasons I prefer the fatigue to the nausea (aside from the obvious) is that it permits more reading.
After years of Chronic Fatigue being dismissed as a non-illness, the UK blood donor service will not accept blood from anyone who has been diagnosed with it! I fact I tell with relish to everyone who tries to tell me it is “all in my head” .
Oh this is so me! I have fibromyalgia too. After giving up work the only place I had the energy to go to was the library. I read and read and read. This kick started my love of writing. When I finally got the diagnosis on top of another condition I was so relieved (although both suck!). I couldn’t have coped without my escape with books.
Great post.