Note: This article is reproduced with kind permission from Sue Ingebretson,* author of FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness.
Whether you’re an avid Downton Abbey watcher or haven’t the remotest of interests in the wildly popular PBS series, I suggest you read on with an open mind. The frenzied fibroworld and pastoral living at a Yorkshire country estate may have more in common than you think.
Because I live and breathe the world of chronic illness, I’m always exploring ways to share that world with others. I also happen to live and breathe the world of PBS Masterpiece Theater’s production of Downton Abbey.
As I thought about connections between fibromyalgia and Downton Abbey, I found my fingers flying over the keyboard. There’s lots to say. I decided 13 was a good stopping point — a baker’s dozen. I’m giving a flour-fingered salute to our beloved Mrs. Patmore and her efficient and innocent scullery maid, Daisy.
But … just like Daisy, some things that look simple on the surface are quite another thing once you dig a little. Grab a shovel and read on …
1) They each begin with a crisis of titanic proportions
DOWNTON: For Downton Abbey, the beginning really was a titanic problem. The sinking of the Titanic created a scenario that sets the stage for continued drama. An heir to the Grantham family estate had been lost. Without a proper male heir (oh dash it all that Lord and Lady Grantham begat girls!), whatever would become of their humble home, Downton Abbey?
FIBROMYALGIA: To be clear, fibromyalgia has multiple causes. There is not ONE problem or event that brings on this condition, but rather a “perfect storm” of them. However, many causes (i.e. nutritional deficiencies, latent infections, genetics, toxic exposures, etc.) may exist undetected and it’s not until an accident, injury and/or an extremely stressful event does the condition – in its fullness – percolate to the surface. (Another clarification: for some, the percolating period is short, for others, it can be quite long – even years).
2) No one can spell them
DOWNTON: Please, do us all a favor and cut out 50% of your W’s from Downton. What it is not — DOWN-TOWN. What it is — DOWN-TON. Got it?
FIBROMYALGIA: Where do I even begin with the misspellings of fibromyalgia? When I was first writing about it, few had even heard it spoken much less tried to spell it. I’ve heard fibralga, fibromaglia, and my favorite, Fibromylasia (which sounds like a very painful country to visit). Think of the prefix “fibro” (meaning fibrous tissues or muscles) + “algia” (painful condition) which pretty much makes it easy to remember. Okay, if not easy to remember, then look it up on Wikipedia. It should be spelled right there … I think.
3) Everything looks “fine” … on the surface
DOWNTON: Upstairs on Downton Abbey everything is picture perfect. From the precisely measured place settings and the taller-than-me floral arrangements to the exquisite coiffures and baubles of the titled; life imitates art. Fine art. But if you mistakenly yawn at the elegant facade you’ll miss out on the undercurrent between the upstairs and downstairs residents. The realities of progress have the aristocracy in a collision course trajectory with the common folk. A “where worlds collide” theme runs amok throughout each episode.
FIBROMYALGIA: There’s a similar theme to those who deal with fibromyalgia: they may look “fine” but don’t feel fine. In fact, they may feel like something that’s been run over by a semi, put through a wood chipper, and then glued back together by graveyard shift assembly line workers. You get the picture. For fibrofolk, things are not always as they appear. It’s frustrating to field insincere compliments. What’s said – “You look fine.” What’s unsaid – “You look fine, so therefore if you say you don’t feel fine, you’re either fibbing, pretending, or trying to get out of something.”
4) A lot of people have no idea what they are – but they sure are talking about them
DOWNTON: After season 1, the PBS crowd was abuzz. Would Mary’s secret be leaked? Could Downton survive the ravaging effects of war? The compelling nature of the series drew attention, the finely woven plots kept them hooked. After season 2, it wasn’t just regular PBS viewers. The word was out. Then news of the unexpected popularity hit mainstream media. News reports, late-night mentions, and parodies (the ultimate in flattery) flourished. Downton Abbey had gone big-time. Even if you’re not glued to your TV on Sunday nights, admit it — you’ve heard of it.
FIBROMYALGIA: I’ve heard people give the strangest descriptions when asked what they know of fibromyalgia. Some are well-meaning, others just plain comical. A chiropractor (who should have known better) once asked me, “Oh come on, it can’t be that bad. Don’t you think everyone wakes up with aches and pains?” Comparing every day aches and pains to fibromyalgia is like comparing an organ grinder Capuchin monkey to King Kong.
As far as popularity goes, fibromyalgia has yet (to my knowledge) to be parodied on late night TV. I have considered writing a stage adaptation of some of my work. But, the world may not yet be ready for "Fibromyalgia the Musical." And speaking of not ready, what’s with the portrayal of fibromyalgia in commercials? It’s so confusing! They depict fibromyalgia sufferers either malingering on a couch or rowing canoes and happily baking cakes. I don’t own a canoe. I’m not fond of cake. And, I don’t know what either has to do with fibromyalgia.
5) Each have long, dry, seasons of nothing eventful happening
DOWNTON: For the die-hard Downton Abbey fan, this is the bad part. The season is so emotional, so gripping, and so devastatingly brief. After a few short weeks in the New Year (for the US watchers) the world of Downton Abbey goes dark. All joy is sucked from life as we wait, sigh, and wait some more for the following year.
FIBROMYALGIA: For those with fibromyalgia, this is the good part. Symptoms of many chronic conditions multiply and worsen in what are called “flares” (NOT “flairs,” by the way). While symptoms may be bad for a season, there are times in between seasons where the symptoms seem to abate or at least minimize. Again, for fibrofolk, this isn’t just a good thing … it’s a VERY good thing.
6) It’s really the biggest pain that runs the show
DOWNTON: For Violet Crawley, the Dowager Countess of Grantham, things are pretty simple. If it’s not done and needs to be, tell someone beneath you to do it. If it’s a task needing a little finesse, manipulation, or coercion, do it yourself. And, by all means, use your position (and your cane) to drive the point home. You are, after all, entitled to your opinion – as is everyone else.
FIBROMYALGIA: Pain, as an over-arching theme, is pretty overt. It may be dull, throbbing, or searing, but in every case, pain steals the attention. While other symptoms need focus too, they often get ignored, or pushed to the back burner. It’s sort of like housekeeping at the Big Top. Imagine trying to focus on exterminating bugs under the bleachers while in the center ring, a lion is eating the tamer. Pain always takes center stage.
7) Social rules and mores are obvious to all, but followed by none
DOWNTON: For the rigid and reigning upper crust of Downton (both the Dowager Duchess and Mr. Carson come to mind), the unwritten rules of propriety may as well be hieroglyph-ed across the walls of the grand foyer. The phrase, “It’s just not done,” is repeated often but heeded never. In fact, the phrase usually precedes the action of someone doing the very thing that’s “not done.” Lady Sybil learned to boil an egg. Lady Edith learned to drive a car. Lady Mary learned to drag a dead body through the upper catacombs of the estate … but actually, that’s something that probably should stay on the “not done” list.
FIBROMYALGIA: There are also unwritten rules about how to live with chronic conditions. One states that if you claim to be riddled with pain, then you shouldn’t be caught laughing, smiling, or – heaven forbid – having a good day at a theme park. And, speaking of parks (and parking lots) – let’s not get started about the stigma of handicap parking. While I have never used this system myself, I definitely understand the need and purpose of the placards for those who do.
8) Those in charge are late to the game to adapt to new trends, treatments, and ways to “deal”
DOWNTON: While Downton’s bell system is still using string pulls, Mr. Carson harrumphed his way through the blasted installation of that most evil device — a telephone. His ever-present disapproving looks remind me of Owl from Winnie the Pooh. Am, I right? See for yourself. Behold the resemblance (sans the tufty horns) to one very annoyed, very perturbed Mr. Carson!
But when it comes to new contraptions, the audacity of Mrs. Hughes beats all. She set the whole “house afire” (almost) with a new-fangled contraption to heat bread. The scorched wheat loaf experiment seems opportune, to me. Although unintentional, I applaud her efforts to rid the world of gluten one piece of toast at a time. This could later be referred to as the Smoking Toaster exposition.
FIBROMYALGIA: Unfortunately, late-adapter fibromyalgia “authorities” are a dime a dozen. I still hear old-school, misleading, and just plain inaccurate advice given to fibromyalgia patients. Here’s a quote from a friend’s doctor when she was first diagnosed. “You won’t die from fibromyalgia, although you’ll wish you would.” Seriously? That’s helpful? Did he complete his bedside manner training at the A.D.A. (Academy of Depressive Advice)?
The good thing is that there is hope, there are treatments, and there are ways to heal. This news should be trumpeted far and wide. And, as long as I continue to hear ridiculously unhelpful platitudes, I’ll continue to sound the alarm with my own horn.
9) You never know what’s going to happen next!
DOWNTON: The unpredictable story lines of Downton Abbey are tantalizing, mesmerizing, and full of allure. Thomas blatantly thumbed his (uppity) nose at the staff of Downton as he left to “move up the ranks” and fight in the war. Who would have ever predicted that he’d later (intentionally!) get his own hand shot off to return? And what about the babies who live – and those who don’t. The weddings that take place – and those that don’t. Prison sentences and exonerations. It’s enough to drive us crazy … or keep us tuned in.
FIBROMYALGIA: Yes, unpredictability is also the hallmark of chronic disease. But it’s not at all tantalizing or alluring. It’s not even entertaining. You may plan to attend a specific event, but your symptom-of-the-day (fatigue, pain, nausea, etc.) laughs at you and derails your plans. You think a small muscle pull will quickly wane and it instead turns into full-body rigamortis. Darn it all. Sadly, there’s no brilliant Julian Fellowes at the keyboard scripting our humdrum lives. But, if he were — it’d be a lot more interesting. Speaking of, I heard an interviewer ask Dame Maggie about her creative acting skills. Her response was something along the lines of, “It’s called a script.”
10) Doctors, legal advisers, estate managers and general authorities all claim to know best, but where’s the referee?
DOWNTON: What happens when authorities butt heads on Downton? Lord Grantham steps in and puts an end to the dispute with sovereign authority. He always makes the right call. Except when he makes the wrong call. Like when he has anything to do with bankers, lawyers, investors, his tenants, his neighbors, his daughters, their husbands, their husbands-to-be, their suitors, their employers, his wife, his mother, his mother-in-law, his chamber maids, his staff, his dog ….
Wait. Certainly Isis has unwavering faith in Lord Grantham! After all, that nasty dog-napping incident wasn’t even her darling master’s fault. Although on second thought, if Lord Grantham had better handled the disgruntled Thomas, it never would have happened. Don’t tell Isis that. Someone has to stay loyally by his side (all right, I know a leash has a lot to do with that, but whatever).
FIBROMYALGIA: When medical professionals, legal professionals, and employment authorities disagree – who steps in to take charge? We do. Or, I should say — you do. I’m giving you permission – right here and now. Like the whole “poof you’ve been knighted thing.” I hereby grant you Team Captain-ship of your own life. You get to decide what’s best for you. Feel bullied by doctors? You get to choose your treatments. Feel at the mercy of the legal and financial systems? You get to use your own knowledge, creativity, and resourcefulness to set things back on track. I know you can. I have every confidence in you.
And, if you’re looking for an additional boost, you can create your own bevy of loyal subjects (the furry wagging kind). I suggest you visit a local rescue shelter. You’re sure to find loyalty, entertainment, and emotional support beyond measure.
11) Everyone in your midst is either a conspirator or confidant, but which is it?
DOWNTON: What would Lady Mary do without the constancy of Anna the Head House Maid? What would Cora, the Countess of Grantham do without the constancy of her lady’s maid, O’Brien – (of course there’s more conspiracy than constancy to that relationship). We get to cheer on the sidelines as pairs line up to support or undermine each other – sometimes both at the same time. Who among us has not groaned, sighed, or a shaken a fist at the TV screen while Thomas manipulated his way out of a tight spot? Of course, even the worst of us can have a good side. I’m willing to bet he’s asked Mrs. Patmore to refrain from serving fowl for the time being. He’s had a steady diet of crow this entire season.
FIBROMYALGIA: When first diagnosed, you can see those around you divide into clearly definable tribes – like the parting of the Red Sea of friends. There’s the Supportive Tribe who’ll bring you homemade chicken soup even if it’s raining buckets outside. Then there’s the Pseudo Supportive Tribe who’ll bring you brownies, Twix, and a coke when you’re trying to stick to a healthy eating “no junk food” plan. In the spirit of the adage, keep your friends close and your enemies closer, keep an eye on your tribes. Keep an open eye to their motives and a closed eye to their faults (just tell them to keep the soup coming).
12) Nearly every conversation – polite or otherwise – is about money or the lack of it
DOWNTON: Will the Downton estate teeter on the brink of bankruptcy again or burble up from the ashes like a Bath stone phoenix? Countess Cora doesn’t even blink at the notion of discussing her own family fortune. Her mother, Martha Levinson (as a flamboyantly rich American), has more than enough dough to spare – but doesn’t. Mr. and Mrs. Bates are trying to scrape together enough to start a home. They’re all part of the familiar haves and have-nots. Those who have it fear losing it. And those who don’t have it, fear they never will.
FIBROMYALGIA: In contrast, if you’re living with fibromyalgia, it’s far more likely that you’re on the have-not side of the equation. If fibromyalgia (or chronic illness) hasn’t at least bled your bank account dry a time or two, you’re not doing it right. Between time off from work, co-pays, supplements, complementary treatments, and out-of-sight out-of-pocket costs, taking on the challenges of chronic illness isn’t for financial sissies. And how can it all be managed? We wish there were an app for that.
13) Bloodlines mean everything – and nothing
DOWNTON: For blue blood families – a pure bloodline means everything. I mean, really everything. You have blue blood or you don’t. In a way, it simplifies things. To Lady Mary, it’s ALL about the blood lines and keeping the status quo at Downton alive – literally. Lady Sybil went rogue on this subject by marrying the chauffeur. I’ll expect the Dowager Duchess some time next season to remark about the petrol running through the veins of baby Sybil.
FIBROMYALGIA: For us, there’s also an issue of blood – blood testing, actually. It’s the first thing the novice or lay person asks, “Is there a blood test for that? How do I know I have it?” What a kerfuffle! There’s no blood test. There’s no skin scratch test. There’s not even an algebra test to determine an official diagnosis. Because of its unknown etiology, it’s technically not a disease at all, but rather a condition or syndrome. That sounds like a big deal, but it isn’t. It’s actually quite common. Lupus, multiple sclerosis, and rheumatoid arthritis are syndromes, too. Of course, they happen to be categorized as autoimmune conditions and fibromyalgia doesn’t fit there either (further underscoring the fibromyalgia/Edith connection). But, rest assured — there are plenty of ways to ascertain a true fibromyalgia diagnosis and a blood test isn’t one of them.
I’ve made many comments above about what fibromyalgia isn’t, but in clinical terms, here’s what it:
Fibromyalgia is a royal pain in the patootie.
Which brings me right back to Downton Abbey. What will go royally right and royally wrong in season 4? You can bet that I’ll be watching.
*Sue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate and the Fibromyalgia Expert for the Alliance Health community of health conditions website.