Awhile back I wrote a post on my journey to get a diagnosis for chronic pain, on being dismissed by the medical community at large and about how I relied heavily on romance novels during that time to cope with fear and depression.
I’m doing much better in the three years since my diagnosis–partly due to prescription medication (formerly outrageously expensive prescription medication) and partly due to my having a better understanding and acceptance of how my body works and what it needs. One of the first conversations I had with my rheumatologist was regarding self care, the importance of recognizing when your body is waving a red flag at you and begging you to slow down, so that you can intercede before you hit a wall. Self care is, and has been, the most difficult part of having a chronic condition for me because it often comes with a large serving of guilt–am I being lazy? Am I somehow doing less than other people?
Self care for me also always involves reading.
I’m writing all of this because of the recent news that Hillary Clinton was diagnosed with pneumonia, that she almost collapsed at a 9/11 memorial, and because the corresponding backlash was vicious.
This is not a political post. I’m not writing about the 2016 election.
I’m writing about how the media responded to a female leader experiencing a legitimate illness, and how that coverage affected me personally. I’m writing to remind all the readers out there who suffer from health issues (be they mental, physical or both) not to believe the hype, and to take care of your body and mind.
The media coverage regarding Clinton and the subsequent reveal that she’d been campaigning with pneumonia seemed to focus largely on two things
- Is Clinton healthy enough to be president?
- Why didn’t she tell the press she had pneumonia sooner?
There was chatter regarding her taking a few days off to cope with an illness that routinely leaves people couch-ridden for weeks.
It all felt very personal to me. I am a woman. I am a leader in an industry that largely excludes women. I am the only woman on my company’s leadership team and I’m at least 15 years younger than my male peers. I also have fibromyalgia. My body, for yet undetermined reasons, goes through a cycle of mostly feeling normal, then flaring up. A flare up feels a lot like coming down with influenza–I have generalized body aches deep in my muscles, so deep they feel unreachable. I’m fatigued. I use “fatigued” specifically because this isn’t being “tired;” this an exhaustion that impacts my ability to do normal things. Sometimes I experience nerve pain in my neck, arms and hands. Sometimes that nerve pain is debilitating.
I’ve learned to mitigate flare ups when they happen with a combination of rest, heat, fluids (hot tea and LOTS of water and occasional glasses of dark red wine), and mental self care. When I feel so crappy I have to rally to get through the day I reward myself with romance novels. I turn away from the TV, from social media, from anything that might make me feel worse.
My body doesn’t have the bandwidth to deal with anything else on top of the fibro, so when I do get sick, I’m largely down for the count. So while my peers might come to work with a sinus infection or (God forbid) pneumonia, I can’t. Illness on top of fibro is more than I can physically handle. As a result I take more sick days than a normal person, and I feel tremendous guilt because of it.
So when Clinton didn’t disclose she had pneumonia to the press, I understood. I deal with health shit a lot, and I’m always torn between discussing it at work or just keeping my mouth shut. I question how much is appropriate to tell my boss. Fortunately he’s never questioned my down time, but every time I send an email stating that I won’t be in that morning, I get nauseated. Often I’m so riddled with anxiety from taking time off, that I don’t get the rest I need that was the actual purpose of taking the time off in the first place.
Part of the problem is that women are not allowed to be sick. There’s the great myth about moms who push through illness because “mom can’t take a sick day!” (insert some kind of “adorable” cartoon of an exhausted woman surrounding by toddlers). Despite the fact that women give birth, that we suffer through periods roughly every 28 days, we are viewed as the physically weaker sex. We are frail. And yet we are expected to push through illness like a champ because that’s what women do. We aren’t supposed to expect a support system that allows for us to be sick. Hell, we can’t even expect mandatory paid leave after giving birth.
The reality is that we push through illness, push ourselves to the breaking point because we don’t have other options. I’m not surprised that Clinton didn’t reveal that she had pneumonia and I’m not surprised that she continued to campaign through it. If I had pneumonia, and I was physically capable of doing so, I would go to work and not disclose it either. The alternative is the question that hovers in the air when a female leader is ill, a conflation of our fucked up view of femininity and health: “Is she too frail to do this job?”
It’s a terrible, awful question and it hovers in my mind every time I call out. I know I’m not too frail to do this job — in fact, I do it well despite my health working against me. I’m afraid of that misinterpretation resulting in opportunities being taken away from me.
In balancing my health, my workload, my anxieties about that workload, and my mental health in general, I look to books. I have towers of books in my house; I’ve long since run out of shelf space and I’ve given up on ever having a flat surface devoid of books. My house will always be dusty. There’s something about being physically near books that I find comforting–like I might reach for a hardcover while whispering “my precioussssss” at any moment. I always have a book in my laptop bag at work and my Kindle in my purse. I need to keep my sanctuary close. It’s like my mental safe room, right there, always within reach.
For me books are so physically and mentally restful for a few reasons. First of all, they provide closure. For the most part, and certainly while I’m flaring up, I read romance novels and thrillers. Both give me a story that promises resolution at the end. The hero and heroine will find their HEA or the killer will found and brought to justice. There’s almost never resolution in the real world, and so knowing that “everything will be okay in the end” is a powerful tonic. When I’m in pain, I tend to catastrophize. Everything becomes more difficult and more dire. I don’t have the capacity to deal rationally–I feel like garbage and I come at everything from an emotional place. Knowing that I don’t have to worry about the outcome of a book is powerful.
Reading also forces me to be quiet, to focus on one thing at a time–and that is incredibly restful. When I watch TV or movies my mind wanders, it’s not enough to keep me in one place. When I read, I have to be focused on that one thing completely. I cannot read and multi-task.
Multi-tasking is a significant part of my day, and it’s exhausting sometimes. Even dealing with the normal day to day routine of being a person while having a chronic condition is multi-tasking. It’s having pain as a constant background noise, complicating the hell out of doing otherwise typical tasks. Getting out of bed, taking a shower, drying your hair, putting on clothes–all of that becomes harder. It’s like moving through quick sand while trying to get through my routine.
I love that when I pick up a book and start to read, I’m gone for a little while. I’m physically but not mentally present. Reading pushes the pain farther and farther into the background of my mind, more than any other task.
Romance novels feel especially healing because the over-arching theme of the genre is that everyone, regardless of their circumstances, deserves to be loved. When I’m feeling especially crappy my brain likes to lie to me and tell me I’m a burden to others, that I’m broken, that people are judging me and finding me wanting. It tells me that I’m just not tough enough to deal with this–that my pain isn’t a big deal and I should be ashamed for letting it lay me low. Romance novels remind me that I don’t have to be perfect–I am still loveable.
I have a special fondness for romance novels that feature a heroine with imperfect health. In Still the One by Jill Shalvis the heroine suffers from chronic pain after a bad car accident and subsequent surgeries. Shalvis nails how people with chronic pain need to negotiate daily in a way that people without pain don’t–I love these heels and they make feel sexy, but if I wear them on this date, I will be in a lot of pain tomorrow. Am I willing to make this trade off? I will always keep a copy of Still the One handy because, for me, the message that someone with chronic pain can have a deeply loving relationship is something I need to remind myself of.
When I’m at my worst, I binge-read because it’s the only thing I feel I have the physical and mental space for, and because it’s incredibly comforting. Regencies tend to be my DEFCON 2 reads–the fiction I go to when my body is nearing the “if we get worse, we’re going to the ER” stage of things. I think these books tend to be cozier, an imagined past where everyone has great dental hygiene and no one dies of step throat. I read When a Scot Ties the Knot in one misery-soaked morning, and “Here, have a snail” cheered me up immensely. You can’t read a book like that and still feel bad.
Sometimes I read Mary Balogh’s Survivor’s Club series over again and have a cathartic cry and let everything bottled up inside of me out. Sometimes I reread The Devil in Winter because Sebastian makes everything better. I reread Manda Collins’ Why Earls Fall in Love with it’s got Cinderella themes and a heroine who knits. I reread Sarah MacLean’s Never Judge a Lady by Her Cover with its badass, pants-wearing heroine. I snuggle up and build a personal fortress out of books by Courtney Milan and Caroline Linden and Erica Monroe and Eloisa James and Elizabeth Hoyt.
Reading is also not physically demanding. When I’m sore enough, I can’t even knit. I basically need to sit still, and I’m not a person who enjoys that. Whenever I hear people talking about how e-readers aren’t “real” books, I want to smack them, because holding a 205g Kindle versus an actual hardcover book is life saver when all the nerves in your arms and hands are having a fire drill. Being able to blow up the text when you’re tired and your eyes don’t want to focus right is amazing. I read predominantly in paper because I spend all day staring at screens and I don’t want to look at any more when I get home, but when I’m not well, I turn to my Kindle.
I know that my anxieties regarding my health are really about how I’m afraid the world would perceive me, not about who I really am. I know that some of those anxieties are grounded in reality because the media coverage of Clinton’s pneumonia confirmed our bias regarding women who dare to be ill. I also know that it’s all beyond my control. I don’t need anyone to believe in my illness or to understand it. I don’t need validation in order to be sick–but when I’m down and tired and emotional, it’s hard to remember that.
My body is not a perfect thing. No one’s is. It will break down from time to time, and I need to be fair to it. I’ll continue to turn to romance novels for healing and rest.
What are your recent recommendations for self-care reads? Whose books build your reading fortress of comfort and protection?
What a beautifully written piece you have shared. You articulate it all so well and you are utterly correct about Hillary and working through a condition in silence. I’m all about self-care myself in terms of not feeling guilty for reading if it helps me get through. I lived with endo for years but it ended for me when I had a hysterectomy. I think the self-care is very important because you have to be careful that the condition doesn’t change who you want to be too much. I was extremely startled when a cousin said that she hadn’t realised how much pain I had lived with until she saw how different I was, a year or so post-surgery.
I always reread for comfort because not only do I get the HEA, I know how I’m going to get there. But I have noticed since I have begun to rely more on my Kindle that I find it harder to find the right book for the moment because you can’t glance at the shelves on a Kindle and find that emotional match. So I’m not getting rid of my paper-keepers anytime soon and if they’re on my keeper shelf then they’re on my Kindle too, because you never know when you might just need that comfort book! So if I think I’ve got the time and space I’ll get lost in Wurts ‘Daughter of the Empire’ and see it through to the end of the third book. Other comforts are Pride & Prejudice (I usually start at Darcy’s letter) some of the Mills & Boon age Stephanie Laurens because I remember how extraordinary they were when I discovered them. I reread KJ Charles, Bujold, Briggs, Andrews, Heyer, Huff’s Valour series and a subset of Nora Roberts, Enoch, Amy Lane and KA Mitchell. My biggest issue with anything more new, is that I don’t remember books based on their covers anymore because they’re all black and white on my paperwhite Kindle, and that frustrates me as I used to be able to know all my books. Or is it that nothing more recent really can beat my list for the journey (both the story and my memory) and the finish?
Absolutely. I credit romance novels for helping me keep my sanity being a high school teacher in a tough school. They allow me to find some quiet and eliminate the chaos after a crazy day with teenagers. We’re on year twelve now and they are still saving the day.
My comments never seem to come through for some reason so I hope this does.
My go to comfort reads for when I need them are
The Blue Sword by Robin McKinley – Girl gets the horse, the sword and the guy in that order, and wins the day.
A Wind In Cairo by Judith Tarr – annoying spoilt prince gets schooled, literally by the heroine, wonderful wonderful horse scenes
Lions of Al-Rassan by Guy Gavriel Kay – the ending shatters me to huge ugly cry every time and its SO worth it
Tigana by GGK – rich involved poignant twisted story of revenge and destiny, with a whole country at stake. Like a blade through my soul.
Paladin of Souls – Lois McMaster Bujold – dotty dowager queen makes a break for freedom, gets the guy, saves the kingdom, tells off a god, and the world doesn’t end because a woman made some choices
The Black Jewels trilogy – I just love these – they are my Heyers of fantasy
I love this post so much – and as someone with a chronic illness (M.E./CFS) it REALLY resonated for me on so many levels. I had the same reaction to the ridiculous media reactions to Clinton’s illness – it felt very personal. And absolutely ditto to the comfort of romance novels.
Thank you so much for writing this!
This is such a wonderful post, that resonates with me in so many ways. I have fibromyalgia and ME as well. Like you, Elyse, it goes through cycles, where I can feel like “my” form of normal, which is not the normal that I took for granted ten years ago; and then I go through cycles, like recently, when I have to put a plastic stool in the shower because I lack the energy to stand up long enough to rinse the conditioner out of my hair. Your health is the fundamental underpinning of every part of your existence, and you don’t realise that until it starts to fail you. Until it feels like your whole body is failing you, and you wish you could trade it in for a new one like a faulty car. It’s frustrating, it’s hard — it’s SO hard, not just for you, but everyone who loves you. I understand feeling like a burden; all the reassurance in the world can’t stop that feeling at times. It takes a very long time to adjust to your new “normal”, to learn—not to “accept” it, so much — I believe in always having hope for improvement, in always trying to appreciate the things that you still are blessed with; I once had a pain psychologist who said “Well, it’s never going to get better, so you just need to learn to deal with it”. This was coming from a guy my age, who was in his first job post-uni, and had quite possibly never experienced pain worse than a bad rugby tackle. Needless to say, we didn’t “click”. But as long as you still have hope, as long as you can still *try*, and celebrate the achievements that might seem tiny and sad to other people, but are *massive* for you, you can still live a fulfilling, loving, pretty damn bad-ass life. You can still do it. You can still make your dreams happen, and other people’s lives are better because you’re in them.
And on to the actual point of the post: I 100% take comfort in books. Without a doubt. Escaping into a book for a couple of hours has got me through more bad moments than I can count, and I have favourite characters whose stories I’ve re-read so many times that they honestly feel like real people to me, who are always with me. (That sounds insane, but— *hugs my books*)
The only way I differ is that I find it hard to read about people who are also in chronic pain – it just hits very close to home. I usually want to escape from that reality, although I can see where you find the comfort in seeing that “even” people with chronic pain can find and deserve love. I’m currently considering writing a character with chronic pain, but I think it would have to be the hero, just to have a certain amount of distance, so I don’t project too much, if that makes sense.
I also understand what you mean about the stigma. Most of my family and friends know that I’m ill; most of my *parents’* friends know that I’m ill a lot of the time. And the problem there is that it can become your sole identity. “That’s so-and-so’s daughter, the one with fibro/ME.” So naturally the first and sometimes only thing people ask when they see you is how you’re feeling. Which is lovely that they care, but…you aren’t only your illness, you know? There’s also the guilt you feel, when you can’t make plans too far in advance, or when you have to cancel at the last minute because you wake up in pain and exhausted, or when you feel like you’re not working at the same level as your peers because your body is failing you.
It’s a minefield. But it always helps to know that you’re not alone. That these issues are (unfortunately) incredibly widespread, far more than I realised before I started talking about it openly.
So to you and every other wonderful, courageous person who posts here about this, you have my empathy, my cyber support, and just all the hugs. xx
So many things in this post I identify with. Especially the fear/guilt of being thought lazy. I sometimes have to fight for the right to pay attention to my body’s signals that it needs a break, and that’s always fraught with second-guessing and feelings of guilt because it inevitably means I’m disappointing someone. Or they think I’m just flaking out.
Hearing that you re-read one of my books when you need self-care is better than winning a million RITAs. Since romance got me through so many tough times, providing comfort to readers is one of the main reasons I write. I’m so honored and grateful that I’m able to pay it forward. Thank you, Elyse.
I,too have a chronic pain condition. When my rheumatoid arthritis is especially bad, I go to comfort reads. Julie Garwood historicals, Nora Roberts, Linda Howard, Amanda Quick, Jayne Ann Krentz, and Lisa Kleypas. New additions include Nalini Singh, Shelly Laurenston, and Julie James. These reads make my stress and pain fade as I dive into these stories and smile.
Oh, and I forgot to add that I like to read thrillers and romantic suspense when I’m feeling awful because no matter how bad I feel, at least I’m not being chased by a serial killer…
Oh man Elyse, can I tell you how much I relate to this? So much.
I actually only got into romance novels last year, when I was recovering from an accident. They were some of the only books that my drug-addled brain could handle, and also they made me happy, which very few things did at that point. (Yay I may have cracked some vertabrae but at least my spinal cord’s intact! I’ll be out of this wheelchair in a few months! doesn’t really make a great rallying cry for happieness).
That said- as someone who struggles a *lot* with PTSD and some other issues as well, Courtney Milan’s books are my go-to comfort reads- particularly The Countess Conspiracy and Unraveled. It’s amazing to find really decent portrayals of PTSD in fiction, let alone characters who get to be happy and have love, while still having PTSD. The condition doesn’t go away, but it doesn’t mean you’re never going to be happy or find love.
My dog appreciates my newfound obsession, because cuddling in bed while I read is his favorite thing.
All I can add to your post is Amen, sister. Even more depressing is the fact that it gets worse as you get older. I turn to the historical romances of Lisa Kleypas and Elizabeth Hoyt and I cannot overstate the healing powers of the movie Enchanted April. Best wishes to you.
Since I realised I didn’t include any actual titles in my rambling post, some of my ultimate comfort reads: Pride and Prejudice, The Nonesuch by Georgette Heyer, Kiss of Snow by Nalini Singh, anything by Laura Florand, a lot of vintage Harlequins from the ’50s and ’60s, a lot of Harry Potter fanfic, historicals by Julie Anne Long, Suzanne Enoch, Elizabeth Hoyt and a hundred others, all of the Agatha Christie, Georgette Heyer and Ngaio Marsh detective novels, and the M.M. Kaye “Death In” series.
You also know it’s a bad time health-wise when I break out the ’95 Pride and Prejudice DVD and start binge-watching Gilmore Girls.
OMG YES THIS.
I still remember with bitterness having to justify reading a book at work, when my co-workers could blow off steam by talking about sports or sleeping at their desks without criticism, while I was “setting a bad example” by READING A BOOK. While, I pointed out, consistently remaining in the top three producers of a 45+ person department. It wasn’t until I almost screamed at my manager that READING WAS HOW I DEALT WITH STRESS that he backed off. And then he wondered why I asked to transfer out of that group!
Yes! All the yes! I have a rare disorder that caused blindness and neurological issues. *Waves at Sassy* A recent operation on my spinal cord left me without the use of my left hand. Fingers crossed it’s temporary. I had to relearn how to walk, feed myself, everything. Thank God for my iPhone and audio books. The books, I read them all. I’m doing better now, can give my kids a two-armed hug. My favorite books now are the Wimpy Kid books, which my 8yo son reads to me, and Tam the Turtle, which my kindergarten daughter is so proud she can read to me. Books, they has the power.
Thank you. I have anxiety and depression, and some days it is all I can do to just pretend that I am functioning. Books (and crappy police procedurals mixed with liberal doses of The West Wing) keep me sane and remind me that there is some happy somewhere. My comfort reads are the new books by my favorite authors that I save for a rainy day – Julia Quinn, Tessa Dare, Sarah MacLean, Elizabeth Boyle, Kristan Higgins, etc – or rereads of SEP, Courtney Milan, Julie Ann Long, … Guaranteed smart and happy.
My chronic condition is just getting old. My knees and various other parts of my body are getting their revenge for some of the things I did when I was younger, stronger and more flexible. But like everyone else, I turn to books to help cope with things.
@RayC and anyone else who gets annoyed with missing the covers on your kindle books. After years of missing that too, I finally downloaded the app that lets me read my kindle books on my computer. It’s a free app from Amazon and the “library” setting shows you all your titles by their covers–in colour! You can have the library setting sort your list by author, title or most recent acquisitions first.
It’s also great for books with interior illustrations and diagrams which tend to be impossible to see on the kindle screen. I don’t often read regular novels on the computer, but the app allows you to download the complete text, change the font and font size as well as the background colour when bright white gets to be a strain on the eyes.
My chronic condition is a stressful job. I don’t call in sick very often (in fact I have over a week of unused sick time in my bank) but I do a lot of stealth reading at the office. 🙂 Not books, usually, but blogs. I have also engaged in a lot of stealth *writing* over the years; most of my (self-)published fiction was produced while chained to a desk.
My go-to comfort reads once I get home are also romances and mysteries, because of that sense of resolution. And I re-read things. Some of the novels in my collection have been read ten or more times.
I also keep an eye out for likely-sounding Star Trek: TOS novels for the same reason. Some of them are parts of mini-series and those can annoy me because of dangling threads, so I go for the ones where the Holy Trinity & Co. solve some galactic problem. 🙂
I don’t really keep good track of titles for my e-books, I let Amazon’s “Manage your content” feature do that for me. If I know I want to read Jennifer Crusie or Jill Mansell, I pull up the list by author and re-download the most appealing title.
Wow … what a wonderful piece! Thank you so much for this post.
What an absolutely beautiful piece, Elyse, and thank you so much for sharing it. I think so many of us feel as you do. I tend to be very healthy, but about 10 years back I got hit, suddenly, with a bad case of the flu. Used to carrying on, I was utterly felled. I lay in bed and reread my Outlander books whenever I was awake, even when my fever was high, and a part of me was completely content. Since then I’ve (perhaps foolishly) avoided getting the flu shot – my feeling being, that every however many years or so, I probably need to rest. But deriving comfort from romance books is also why I write: I’ll never be a mega-bestseller, but if I could know that at some time my book(s) (not yet published!) could bring comfort and peace to someone ailing, I would be sufficiently rewarded.
What a fantastic post. I can relate to all of that – especially the guilt part. I always feel I’m somehow ‘cheating’ if I’m not doing at least two things at once. The only time I can focus solely on one thing is when I’m reading.
Thank you. You’ve made me pause and think about what I do to myself on a day to day basis. I should give myself a break.
Thank you Elyse, too many things I agree with to list them all, but perhaps the most important is the ‘Am I really having a rough time or am I being lazy?’ I sat down to read SBTB because I knew if I didn’t take a break I would have problems doing things later and there is much to get done before we go on holiday on Monday, so it is a paticularly relevant post 🙂 My problem is adhesions that cause pain and the associated exhaustion that comes with the pain, even though it is fairly well controlled these days (yay for a good Pain clinic!).
@Lucy Parker people are different 🙂 for me knowing that there isn’t likely to be anything like a cure for adhesions has meant I have started to learn how to get the best I can out of life with them and the pain they cause, rather than wasting energy in a fight that can’t be won. This has made a huge difference in my ability to take time when I need to rather than just trying to work through regardeless then being wiped out for the following couple of days.
I find it very hard to read new books when I am bad, even romances when I know there will be a happy ending – I’ve been stuck on age 228 of Lisa Keyplas’ Someone to Watch Over Me for weeks because I suspect Victoria is about to be in a lot of trouble and just can’t face it. I reread Elizabeth Moon (not romance, but very well written and she has main characters of all ages up to pensioner), Tanya Huff, Mercedes Lackey, Andre Norton, Patricia Briggs, Gail Carriger and probably more I don’t remember right now and can’t see because the book shelves are double stacked.
You are brave and amazing and thank you for continuing to share your story. It is helping so many not feel alone. When I was going through whatever I was in, I often thought of you initial post where you shared about your health issues. So thank you for continuing to share and reach out to people. It matters.
When I was most sick and not myself for months and months, I didn’t want to read, reading didn’t bring me the comfort I expected. But as I’ve been coming out of my “fog” and feeling more myself, I just want time to devour all the books I put aside. It’s so interesting how different we process things, even our great love of reading.
I emailed a good friend last week to tell her that the book she sent me was a lifesaver. There have been periods of my life that were very emotionally challenging for me and, when my grandfather died when I was in my twenties, a pal sent me the paperback of The Eyre Affair. The first four books in that series kept me afloat during an awful summer–the mix of suspense and absurdity were just escapist enough to get me through. A couple of years ago, there were personal problems and a brilliant friend lent me the entire Phryne Fisher series, one volume per week, and I credit her (both those women, friend Karen and author Kerry Greenwood) with saving my marriage and my sanity.
I’ve got a tense autumn upcoming and getting the notice i’d been gifted a kindle book was a delight, as was the book itself.
I comfort read Sarah Addison Allen, Marisa de los Santos (especially Belong to Me–beauteous and cathartic) and Courtney Milan, always Courtney Milan.
@Jazzlet, I totally understand that learning to accept a baseline situation that can’t be changed can be a powerful tool in moving on, and constantly grieving for a past way of life, rather than living in the present and looking at what the situation is now and making the very best of it, is not necessarily helpful or healthy. It sounds like you’re doing great in learning what your body needs and giving it that, and I wish you the very best. 🙂 I think, in my situation, which also includes another medical condition that can be improved by medication, surgery, etc, just being bluntly told to “stop looking for improvement” —when many things can and do offer even small improvement— and the whole approach of that particular medical professional was just really unhelpful and dispiriting. There was a doctor and a nurse in the room at the time who were equally unhappy with what he said.
I also believe there always has to be hope. And that’s not necessarily hope for a “cure”. I stopped expecting that a long time ago, and I have adjusted to a different life now than the one I had a decade ago, for the most part, but you still have to have hope that there will always be joys and up days and love and kindness, and all the things that help balance pain and exhaustion and sadness. And nobody should ever have their hope taken away in that respect.
Ahem. End of philosophising. 🙂
Elyse, thank you so so so much for this post. I have fibromyalgia and endometriosis, and like @Jazzlet, I have tons of adhesions from surgeries one and two; and I’m headed into my third surgery for that in November (wheee); I also just found out that I 99.99 likely have celiac. Like you, I work in a highly-demanding, male-dominated industry, and like you, I understand the feelings of guilt that come with forcing yourself to take self-care. My husband calls me the world’s worst patient because I WILL push through when I feel the flare coming, and then I’m in even worse shape.
I read almost exclusively historicals, but I recently discovered Shana Abe, who writes shapesihifting dragon romances, and I am getting all of those to read during surgery convalescence. If anyone has any recommendations like that, I will happily take them (I seem to need the historical setting in my romances, even if they’re paranormals).
For comfort, I would have to say Meredith Duran is always reliable, as is Kleypas and MacLean (but there’s so much LESS of MacLean, it feels like).
Thank you Elyse for your wonderful post; I’m just sorry that you and other Bitchery members have to suffer these pains (both mental and physical) that culminated in this entry. As for me I’ve spent ten plus years dealing with depression on and off; sometimes I joke with my husband that we have three cats and a “black dog” as our pets.
I think one of the things that really resonated with me from your story and other Bitchery members’ stories is the notion that whatever it is that ails you is not considered ‘real’ or ‘significant’ by other people. I really related to that as it’s something I’ve struggled with since I was first diagnosed at 14 and was continually told ‘cheer up, Ginge it might never happen, or ‘what have you got to be depressed about? All teenagers are moody; you’ll grow out of it’ or my personal boogeyman phrase ‘well everyone feels sad sometimes, but you just have to get on with it…’
Although I have an incredibly supportive boss, I was nodding fiercely when you talked about the stress of even just phoning in sick…I get that too, and it’s kind of nice to know I’m not alone, especially as my scumbag brain likes to play the recycled hits of ‘You’re Broken, Worthless and Letting Everyone Down’ on a loop.
Reading has always been my sanctuary, and although I was a staunch paper only girl for many years I have embraced the Kindle fully now that I can carry my entire library with me anywhere. My go-to comforts vary depending on what flavour of ‘depressed’ I feel when a bad bout strikes – am I curled in a foetal ball in bed not able to get out of it ? – then it’s vintage Nora Roberts ‘found family’ themed novels to the rescue; or if I suddenly want to burst into tears at my desk because I’ve read too many reports about how sh!tty people can be (I analyse a lot of elder abuse cases in my work) I want to read something that will make me laugh (Christopher Brookmyre is good for this). On days when I haven’t got the energy to interact with people at all I want to retreat to somewhere fictional and cozy so cozy mysteries or Kristan Higgins and Jennifer Crusie type small town fiction works for me.
I also sometimes like to read serial killer novels or psychological thrillers to force my brain to do some actual thinking instead of negative thought stressing.
Thank you for this, Elyse.
@Jazzlet – also very jealous (and thrilled for you!) that you have a good Pain Clinic! They seem to be difficult to find. 🙂 I do have an excellent GP and rheumatologist, though, so I count my blessings there.
Thank you so much for sharing.
Sending you love and warm wishes.
Elyse, I know I’ve said it in the past but again I just want to say THANK YOU. If it wasn’t for your original post I wouldn’t have had the language to use to finally get a diagnosis. I saw so much of me in your words that it gave me the determination to keep fighting even after being told I was fine by countless doctors. One year later I now know for a fact this “fibro thing” isn’t in my head and I have the tools to self manage.
Romance novels got me through so much when life sucked. Divorce, death of my dad, stress over my health. They taught me to be spunky and not cower in a corner and to be able to reframe my head when things were at its worst. These books and the community around these books have been like a lifeline at my worst times and more importantly have brought joy back.
So thank you Elyse. I can’t say it enough
Such a wonderful article,Elyse-my mom is going through chemotherapy(which is working, thank goodness, but still hard on her physically) and often she gets a good burst of energy and wants to do things around the house due to “don’t want to be lazy” feelings. Believe me, she’s far from being anything of the sort!
I do what I can to help her(I have some health issues of my own) and reading is my big comfort. At the moment, I’m rereading Persuasion,which is my favorite Jane Austen novel and currently reading for the first time The Loveliest Chocolate Shop in Paris by Jenny Colgan(which suits my situation well, with the heroine having medical issues,along with a couple of other characters!).
I’d just like to say to those who are helping out loved ones with health problems to not forget practicing self-care on themselves. It’s all too easy to overlook yourself when you’re taking care of someone else and in order to help them better, you need to take a little time to recharge every now and then.
Thanks a lot Elyse for that wonderful post. You expressed so many things clearly. I was recently talking to my colleagues at lunch – all male, all Clinton supporters – who were bemoaning how “badly” she handled it, and how she was hurting herself. I told them that they simply did not understand how unwinnable the situation was for her.
I have a somewhat visible chronic condition, needing to use a cane to walk. My colleagues have the privilege to take sick days and never worry whether it will be seen as a sign of a bigger problem, or them being unfit for their job. For someone like us, once “is she too frail” questions is raised, it can become a real catch-22.
Anyway, yes, books are a big part of my sanity. I used to re-read a lot – older Mary Balogh, Jo Beverley, Susan Elizabeth Phillips, Jennifer Crusie. Now that I have a kindle, I managed to buy so many electronic books that I haven’t read any of the old favourites recently. It still brings me comfort to have all those shelves, though, and I have a couple of hundred unread books on Kindle that are definitely part of my self-care. I read every night before bed, and after various stresses of the week I am always looking forward to doing more reading on the weekend.
I have to say, though, I am more with @Lucy Parker, I often shy away from portrayals of disability in romance. Though I have a different reason – in my opinion, too often the books I read promote an unrealistic vision of “being heroically stoic” in face of pain, or doing incredible feats despite it, as if this is the only thing that makes the person worthy. This is the opposite of self-care, as it were. But one of my old favourites is Miles Vorkosigan series by Louis McMaster Bujold – she builds an amazing portrait of someone struggling against disability and eventually making peace with it. “Memory” is by far one of my favourite books, though to fully appreciate it, one needs to read the series before it.
@ Lucy Parker I am lucky living in Stockport in the UK that there are three Pain Clinics within reach, the first wasn’t so good, but the second have really helped both with a change in my drug regeime that means I’m not fuzzy-headed all the time, and with psychological work that is teaching me to be compassionate to myself – the way I would be to a friend.
I love this post. I may not have a chronic illness, but just get sick in the “normal” way makes me feel guilty. A few weeks ago I had my upper right wisdom tooth removed and wasn’t able to eat certain foods for the week leading up to and after the extraction. I usually cook dinner 6 days a week, but I didn’t cook at all during this time and I kept finding myself apologizing to my dad because he had to take care of all his meals, which basically meant take-out every night. I also didn’t clean anything during that time because I was still going to work despite the pain, so when I got home I was wiped out and didn’t want to do anything more straining than watching Netflix. Nit only did our apartment not get cleaned period, but dishes that I didn’t even use were left in the sink for me to clean almost a week later. Despite the fact we both have full time jobs, I am expected to do everything around the apartment. Part of that comes from my grandmother and my mother, who both babied my dad throughout his entire life. He doesn’t get that sometimes I need help. I don’t want to spent my entire Friday night or Saturday cleaning because I didn’t have time to tidy up all week long. It is so frustrating and yet if I ask for help, I feel guilty because I should be able to do it all myself. Weaker sex my ass.
My mom does have a chronic illness (Myasthenia Gravis) and she just pushes through it because if she didn’t take care of things they wouldn’t get done. She has the powering through gene in spades. When she was first getting sick back in 1995, she felt she couldn’t complain about not feeling normal and rarely asked for help for the first 5 months of being sick. The thing that sticks out in my mind is that she insisted on walking my brother and me the 5 blocks to school despite having double vision, something no one knew about until much later. My dad had a car and could have driven us to school. I was also old enough to get both of us to school safely, but she felt that if she didn’t take us she was somehow letting us all down. It is a ridiculous thought, but she’d been conditioned from birth to think that she needed to do everything for everyone. Men and boys are taught that they’re place is in the professional world and are meant to bring home the paycheck. They’re taught that wanting to do anything else is unmanly or feminine, which is just as toxic as the idea that women need to kill themselves to make sure everything is perfect for everyone. We need to change how we talk to children, how we teach them about men and women. We’ve come a long way, but we still have far to go. Women now have the option to work if we want, but we’re still told that we’re the ones who need to cook and clean, that we need to watch the kids, and that we need to keep the men in our lives happy. We’re told that we NEED to have kids because our lives will be empty without them. No, I don’t NEED to have kids if I don’t want them.
Thank you for your lovely post. I do not have a chronic illness, so I can’t presume to know how those of you who do feel. I HAVE had lots of weird medical issues and tend to have a lousy immune system, which means I have had to take off extended time for multiple surgeries and tend to get sick more than your average adult. Throw in 2 kids who get sick too, and I am so, so familiar with that nauseated feeling you get when you call off. I’m always worried I’m going to be fired, be stripped of some of my responsibilities, or just not get opportunities in the future because of my health. It’s scary and frustrating and rage-inducing, all at the same time. I too use reading to calm myself and give my mind a break from the anxiety for a while.
Thanks Elyse for your essay, I hope one day you will publish these wonderful insights into your life as a book.
Elyse, thank you for posting this. Yes to everything you said! Remembering to do self-care, then feeling guilty, feeling anxious, coping and consoling yourself with the guaranteed HEA. I also search for books specifically with lead characters who are dealing with chronic illness or disability. It’s a huge relief to read about people like me. Seeing them get that HEA motivates me.
@Gingerly I also have Depression and have pick my reading accordingly. If I’m in a dark hole of despair even romantic suspense or murder mystery is too much to handle. Some cozy Nora Roberts, Nalini Singh, Jill Shalvis or older Jayne Ann Krentz is always good then. If I’m feeling ok I read the In Death series because of the overarching Eve/Roarke relationship and how Eve especially deals with her own past trauma.
I’ll also admit I’m a sucker for just about any romance with a wounded veteran hero/heroine story.
Thank you for a thought provoking post, Elyse. I hope it will make me a more thoughtful person.
chacha1, you mentioned a desire to hear of ‘likely-sounding Star Trek: TOS novels.’ I don’t know if my favorites will fit the bill, but I’ll list them anyway. Yesterday’s Son and Time for Yesterday both by A.C. Crispin, Uhura’s Song by Janet Kagan, Ishmael by Barbara Hambly, The Kobayashi Maru by Julia Ecklar, Doctor’s Orders by Diane Duane, Dreams of the Raven by Carmen Carter, and The Pandora Principle by Carolyn Clowes.
Amarie, the heroine of Thea Harrison’s Oracle’s Moon is not a wounded veteran, but she is dealing with life changing injuries. Perhaps it might appeal.