THE BIG SICK

In pain and ig­nored? Why the med­i­cal sys­tem fails us.

ELLE (Australia) - - Contents -

I was in the back of a taxi, driv­ing through the streets of New Or­leans, when I felt it: a twist of ex­cru­ci­at­ing pain, like some­one had stuck a screw­driver un­der my rib and spun it over and over, un­til it was firmly en­trenched there. I clutched at the area, won­der­ing what it could be. Then it hap­pened again, and again. I sud­denly felt nau­seous; I asked the cab driver to pull the car over so I could be sick. My best friend, a nurse, told the driver to go to the near­est hos­pi­tal when I was ready to get back in. Nor­mally this friend takes a tough-love ap­proach to sick­ness (be­ing a nurse makes you see hang­over headaches with a bit more per­spec­tive), but there were other con­sid­er­a­tions to make: I was five months preg­nant.

At the hos­pi­tal, I was given an ul­tra­sound but the nurse couldn’t find any­thing wrong. The pain was still there. The nurse came back with a packet of cook­ies, in case I was hun­gry. I stopped short of throw­ing them in her face but I think she could tell, from my ex­pres­sion, that I very much wanted to. I didn’t want cook­ies, I wanted to know what was wrong with me, or with my baby. I was 27, in a for­eign coun­try not ex­actly known for its ef­fi­cient hos­pi­tal sys­tem, preg­nant and with­out my part­ner. Oh, and in a level of pain I had never ex­pe­ri­enced be­fore.

In the end, I walked out of the hos­pi­tal, still in agony, clutch­ing that packet of cook­ies and none the wiser to what was go­ing on in­side my torso. I was told, “This is what preg­nancy is some­times,” and it was only when I came home to my own doc­tor that she sug­gested my grow­ing

uterus was es­sen­tially squash­ing my gall blad­der, hence the ex­treme lev­els of pain. A sec­ond ul­tra­sound back in Syd­ney con­firmed this. I was fine, es­sen­tially, even though the pain came back in­ter­mit­tently and, cru­cially, so was my baby. But it had taken a stay in hos­pi­tal, two ul­tra­sounds, days of bar­gain­ing with the travel-in­sur­ance com­pany and a flight home to get to that point.

I’m one of the lucky ones. I’ve never had any ma­jor health prob­lems, and aside from the feel­ing that my in­sides were about to burst in that taxi, and two rounds of labour, I’ve never re­ally felt ex­treme pain. I count my­self lucky not only to have so far dodged pain it­self, but also the med­i­cal es­tab­lish­ment’s rou­tine dis­missal of women’s pain. The off­hand way I was walked out of that New Or­leans hos­pi­tal felt dis­mis­sive to me, but that was a drop in the ocean com­pared to what many women ex­pe­ri­ence daily.

Re­search shows that not only do women ex­pe­ri­ence more pain than men, but when they do, it’s of­ten ig­nored. It’s only now, in 2018, that doc­tors are dis­cov­er­ing that pain dif­fers greatly be­tween the sexes. Re­search pub­lished in March in the Jour­nal Of

Neu­ro­science from the Univer­sity of Texas at Dal­las found male and fe­male ro­dents had dif­fer­ent pain re­cep­tors, and as­serted that it was likely the way hu­mans ex­pe­ri­ence pain is sim­i­larly sexspe­cific. Dr Ted Price, one of the lead re­searchers, says the over­sight is down to sex­ism. “We’ve been over­look­ing a key vari­able for a long time, and I’m as guilty as every­one else,” he said in a state­ment. “Pro­fes­sion­ally, we saw no rea­son to do it un­til 2014. Every­one I know do­ing these stud­ies is find­ing new and in­ter­est­ing mech­a­nisms that we’ve sim­ply over­looked.”

And the pa­tients who have been worse off for this over­sight are, of course, women. “The num­bers are fright­en­ing and de­press­ing,” says Maya Dusen­bery, au­thor of Do­ing Harm: The Truth About How Bad Medicine And Lazy Sci­ence Leave

Women Dis­missed, Mis­di­ag­nosed, And Sick. Dusen­bery is the for­mer edi­tor of web­site Fem­i­nist­ing, and wrote Do­ing Harm af­ter work­ing on an in­ves­tiga­tive fea­ture on the fact that women are seven times more likely than men to be mis­di­ag­nosed and dis­charged from hos­pi­tal while hav­ing a heart at­tack. (“It caused a huge brouhaha, but not in the way I imag­ined,” she says. “Doc­tors were like, ‘Oh, we have to em­power women to recog­nise their symp­toms.’ I was like, ‘No, these women are pre­sent­ing with their symp­toms. You are ig­nor­ing them!’”)

Then she started look­ing at the other re­search around women and pain. It’s fright­en­ing: men wait an av­er­age of 49 min­utes to re­ceive med­i­ca­tion for ab­dom­i­nal pain – women wait 65. Women are less likely to be given opi­oid painkillers (the most ef­fec­tive type) in the emer­gency room than men. Af­ter they’re pre­scribed, women wait longer to re­ceive them. And even though Professor John Guille­baud of Univer­sity Col­lege Lon­don made head­lines by claim­ing pe­riod pain can be as painful as a heart at­tack, it’s some­thing that’s still ig­nored by doc­tors. It’s lit­tle won­der that an Amer­i­can sur­vey found that 80 per cent of women felt a man in their sit­u­a­tion would be treated dif­fer­ently. Al­most half said a doc­tor had told them it was “all in their head”.

Lena Dun­ham re­cently wrote a heart-wrench­ing on­line es­say about her 10-year strug­gle with en­dometrio­sis, which ended in a hys­terec­tomy. “I wake up sur­rounded by fam­ily and doc­tors ea­ger to tell me I was right. My uterus is worse than any­one could have imag­ined. In ad­di­tion to en­dome­trial dis­ease, an odd hump­like pro­tru­sion, and a sep­tum running down the mid­dle, I had ret­ro­grade bleed­ing, AKA my pe­riod in re­verse, so my stom­ach is full of blood. My ovary has set­tled in on the mus­cles around the sacral nerves in my back that al­low us to walk. Be­cause I had to work so hard to have my pain ac­knowl­edged, there was no time to feel fear or grief,” she writes.

Ac­tress Kate Walsh (13 Rea­sons Why and Grey’s Anatomy) re­cently re­vealed she had to push for her male doc­tor to give her an MRI. She was first of­fered an­tide­pres­sants (for symp­toms that in­cluded ex­haus­tion, cog­ni­tive dif­fi­cul­ties and not be­ing able to fin­ish sen­tences) and when she fi­nally con­vinced the doc­tor to re­fer her for an MRI, the test re­vealed a “very size­able” tu­mour in her left frontal lobe.

Last year, a 22-year-old mother in France died of mul­ti­ple or­gan fail­ure, shortly af­ter be­ing mocked by an emer­gency op­er­a­tor, who told her, in re­sponse to her sug­ges­tion that she felt like she was go­ing to die, “You will die cer­tainly, one day, just like every­one else.”

You’d imag­ine, as an out­sider, that pain is what doc­tors treat, but that’s not ex­actly the case – doc­tors are more in­ter­ested in keep­ing us alive and dis­ease-free. Pain is a far lower pri­or­ity. Carol Ben­nett, CEO of Pain­aus­tralia, tells me that most doc­tors only study pain man­age­ment for four hours of their four-year de­grees. “Pain is dif­fi­cult to di­ag­nose be­cause it’s not al­ways vis­i­ble,” says Ben­nett. “You can’t al­ways test for it, or test eas­ily – for en­dometrio­sis, for ex­am­ple, the only way to truly test is to do a la­paroscopy, which is in­va­sive and costly.”

There’s been a his­toric dis­missal of women’s pain since the an­cient Greek con­cept of the “wan­der­ing womb”: the idea that women’s ail­ments were caused by their wombs mov­ing in their bod­ies (one sug­gested treat­ment was preg­nancy, to “an­chor” the rogue or­gan). Then there was the blan­ket di­ag­no­sis of “hys­te­ria”, a word de­rived from the Latin “hys­ter­i­cus” (of the womb) – the be­lief that women were too emo­tional for their own good.

In Do­ing Harm, Dusen­bery writes about the way women’s symp­toms are brushed off as the re­sult of de­pres­sion, anx­i­ety or “the all-pur­pose favourite: stress”. Some­times, she says, symp­toms are said to be part of women’s nor­mal phys­i­o­log­i­cal states: men­strual cramps, menopause, be­ing a new mum. “Some­times, other as­pects of their iden­tity seem to take cen­tre stage: fat women re­port that any ail­ment is blamed on their weight, trans women find that all their symp­toms are at­trib­uted to hor­mone ther­apy, black women are stereo­typed as ad­dicts look­ing for pre­scrip­tion drugs. What­ever the at­tri­bu­tion, there is of­ten the same cur­rent of dis­trust: the sense women are not very ac­cu­rate judges of when some­thing is re­ally, truly wrong with their bod­ies.”

“Women think that hav­ing pain – to the ex­tent of TOR­TUR­OUS PAIN – is part of BE­ING A WOMAN”

In Aus­tralia, Syl Freed­man, the co-founder of En­doac­tive, which is a com­mu­nity or­gan­i­sa­tion that ad­vo­cates for women with en­dometrio­sis, says she’s had count­less pa­tients tell her that doc­tors have dis­missed their pain, ef­fec­tively say­ing it’s all in their heads. There was the pa­tient whose doc­tor flat-out said, “En­dometrio­sis isn’t real,” and the one who asked, “Do mad peo­ple get endo or does endo make you mad? It’s prob­a­bly a bit of both.” And guess what doc­tors of­ten “pre­scribe” as a treat­ment for en­dometrio­sis pain? Preg­nancy (more on this later).

The prob­lem, too, is that while we think of doc­tors hav­ing all the answers, ac­tu­ally, they of­ten sim­ply don’t know as much about women’s health as they do men’s. An­gela Saini, au­thor of

In­fe­rior, about sci­ence’s of­ten rocky re­la­tion­ship with women, writes, “We think the sci­en­tific method can’t be bi­ased or loaded against women. But we’re wrong.” She cites Dr Ja­nine Austin Clay­ton, as­so­ciate direc­tor for women’s health re­search at the Na­tional In­sti­tutes of Health in the US, who told the New York Times, “We lit­er­ally know less about every as­pect of fe­male bi­ol­ogy com­pared to male bi­ol­ogy.”

Fewer fe­male doc­tors means there’s been less in­ter­est in women’s health. In 1986 in Aus­tralia, only a quar­ter of GPS and less than one in six spe­cial­ists were women. By 2011 it had risen to 43 per cent of GPS and around one third of spe­cial­ists be­ing women. And while med­i­cal re­search has been dom­i­nated by men, it’s slowly chang­ing. This year, the Na­tional Health and Med­i­cal Re­search Coun­cil awarded 55 per cent of its grants to women, re­dress­ing the im­bal­ance of ear­lier years, like

2013, when men were given 66.4 per cent of fund­ing. Still, the knowl­edge gap, as Dusen­bery puts it, per­sists. Take the 2014 sur­vey study by re­searchers at Hum­boldt Univer­sity in Ber­lin, and Mac­quarie Univer­sity in Syd­ney – it an­a­lysed more than 300 pa­pers on gen­i­talia pub­lished be­tween 1989 and

2013 and found al­most half only looked at male gen­i­talia. Only eight per cent in to­tal looked at fe­male gen­i­tals. (Re­porter El­iz­a­beth Gib­ney called it “the case of the miss­ing vagi­nas”.)

Un­til the ’90s, it was com­mon for med­i­cal tri­als to be car­ried out ex­clu­sively on men. Some­times there were valid rea­sons for this – for in­stance, not want­ing to give ex­per­i­men­tal drugs to women who may be preg­nant and not know it, but the re­sult was that we now know more about how to treat men than we do women. For al­most all of mod­ern sci­en­tific his­tory, women have been given the same treat­ment as men, de­spite this gap in re­search. This means that when women present to the doc­tor with dif­fer­ent symp­toms, they’re of­ten not be­lieved or mis­di­ag­nosed. With heart at­tacks, for in­stance, which are of­ten over­looked in women, the signs vary greatly be­tween the sexes: women with heart at­tacks tend to have in­som­nia, fa­tigue and pain from head to chest, whereas men have the clas­sic crush­ing pain in their chest. So if doc­tors are look­ing for the male symp­toms, which are more widely known, then they may miss warn­ing signs for women.

“With women and pain, there is so much go­ing on,” says Dr Thierry Van­cail­lie, a clin­i­cal gy­nae­col­o­gist and pain spe­cial­ist at the Women’s Health and Re­search In­sti­tute of Aus­tralia. A pi­o­neer in de­vel­op­ing min­i­mally in­va­sive treat­ments for women with en­dometrio­sis and pelvic or­gan pro­lapse, Van­cail­lie was one of a team of doc­tors who founded the in­sti­tute to specif­i­cally treat women’s pain. He’s seen first­hand what hap­pens when fe­male pa­tients are mis­di­ag­nosed or sim­ply ig­nored, and he be­lieves the root causes are cul­tural. “One of the big­gest dif­fer­ences be­tween men and women, of course, is that women ex­pe­ri­ence pain reg­u­larly with men­stru­a­tion. So if a woman comes in say­ing she has a painful pe­riod, of­ten the re­sponse is, ‘Oh, that’s nor­mal.’”

This nor­mal­i­sa­tion of pain is deeply em­bed­ded in women. Freed­man re­mem­bers be­ing told, even be­fore get­ting her first pe­riod, to ex­pect pain. “I was con­di­tioned to think about pe­ri­ods as painful, so I didn’t re­alise that my en­dometrio­sis symp­toms were any­thing ab­nor­mal. I thought all women had to take days off work with pe­riod pain. Every sin­gle month.” It took 11 years and a chance men­tion of her in­con­ti­nence (oc­ca­sion­ally Freed­man would pee when she laughed) to her mother, who was alarmed (she was 20 and had no chil­dren) for Freed­man to be di­ag­nosed with en­dometrio­sis and un­der­stand that her de­bil­i­tat­ing pe­ri­ods weren’t par for the course. But she’s far from the only one.

En­dometrio­sis ex­pert Dr Tamer Seckin says, “Women think that hav­ing pain of all de­grees – to the ex­tent of tor­tur­ous pain – is part of be­ing a woman.” Think of the way we of­ten in­ter­nalise the pain of child­birth as a crown­ing achieve­ment, re­fus­ing epidu­rals and other in­ter­ven­tions. It’s as if, like Siob­han Fen­ton wrote in The

In­de­pen­dent, “To ask for re­lief is to be less of a woman, or to give up the pre­tence of women be­ing silent, stoic re­cep­ta­cles of re­pro­duc­tion. To de­mand med­i­cal dis­course, aid or in­ter­ven­tion in the form of pain re­lief would be giv­ing up the deeply gen­dered game of keep­ing quiet.”

Abby Nor­man is the au­thor of Ask Me About My Uterus,

a mem­oir about hav­ing en­dometrio­sis. She’s an ex­am­ple of what Dusen­bery calls the “trust gap”, the at­ti­tude that women can’t ac­cu­rately as­sess their own bod­ies. She told nu­mer­ous doc­tors she was in pain dur­ing sex, but was turned away every time – un­til her boyfriend came with her and con­firmed her story. “Now they knew I couldn’t put out like a woman should, they had an abun­dance of sug­ges­tions,” she writes.

“Not be­liev­ing women in a med­i­cal con­text is like not be­ing be­lieved in a sex­ual-vi­o­lence con­text,” says Dusen­bery. The idea of the “per­fect pa­tient”, she says, is rife for women who ex­pe­ri­ence chronic pain. “You don’t want to be too hys­ter­i­cal, be­cause then you’re dra­matic and it’s all in your head. But you can’t be too stoic, ei­ther, as then there’s noth­ing wrong.” There are par­al­lels with sex­ual-vi­o­lence vic­tims, who are of­ten tasked with be­ing “per­fect vic­tims” – stat­ing their case plainly but not dis­pas­sion­ately, able to prove they didn’t “pro­voke” the at­tack, and so on. It’s dev­as­tat­ing, says Dusen­bery, and it’s in­cred­i­bly com­mon. She tells me about a pain spe­cial­ist she in­ter­viewed for her book, who would “coach” her fe­male pa­tients to use every re­source they could muster to not cry at ap­point­ments for chronic pain, know­ing that tears of­ten led to dis­be­lief and were seen as signs of “emo­tional is­sues”, which doc­tors would choose to treat in­stead of the pain.

El­iz­a­beth Howard is an os­teopath who works along­side Van­cail­lie. She sees a lot of fe­male pa­tients who have been to nu­mer­ous doc­tors for chronic pain, and been dis­missed or told their symp­toms aren’t real. “A lot of them have post-trau­matic stress dis­or­der be­cause they’ve not been treated well by other med­i­cal pro­fes­sion­als,” she says. “And a lot just give up al­to­gether. I mean, when you’re not treated with re­spect, and it’s ei­ther im­plied or ex­plic­itly stated that you’re crazy, why would you keep go­ing? So a lot of these pa­tients are left in no-man’s land.”

While the knowl­edge gap and trust gap make sure women’s pain is reg­u­larly dis­missed, the re­al­ity is there re­ally is a pain gap. Re­search has shown that women with mul­ti­ple scle­ro­sis, rheuma­toid arthri­tis and chronic fa­tigue syn­drome are less re­spon­sive to drugs made to treat these ail­ments, as well as to stan­dard drugs like anaes­the­sia and ibupro­fen, but it was only in the ’90s that re­searchers be­gan look­ing at the dif­fer­ences in pain ex­pe­ri­ences of men and women, some­thing which aca­demics say was frowned upon in the ’70s and ’80s, due to an in­sis­tence that the gen­ders were equal. But cul­tural and so­cial equal­ity is dif­fer­ent to be­ing bi­o­log­i­cally iden­ti­cal, and this one-size-fits-all ap­proach has meant we’re only now find­ing out that the way we ex­pe­ri­ence pain dif­fers ac­cord­ing to gen­der.

In lieu of med­i­cal re­search, though, women have ad­vo­cated for them­selves. One stun­ning achieve­ment has been in the treat­ment of ovar­ian cancer, tra­di­tion­ally called “the silent killer” by doc­tors and re­searchers. In re­al­ity, though, for many years women with ovar­ian cancer had been pre­sent­ing with symp­toms like ab­dom­i­nal dis­com­fort and di­ges­tive prob­lems. They were rou­tinely dis­missed as hav­ing IBS or, as Dusen­bery quotes one doc­tor, as hav­ing gone to “too many cock­tail par­ties and eat­ing too many hors d’oeu­vres”.

At an ovar­ian cancer sur­vivor con­fer­ence in the US in 1998, things came to a head when a doc­tor on stage once more pro­fessed that ovar­ian cancer had “no symp­toms”. The women in the au­di­ence who had been telling their doc­tors for years about their symp­toms es­sen­tially rushed the stage in an an­gry mob. One doc­tor in the au­di­ence, Dr Bar­bara Goff, was in­trigued enough by this out­pour­ing of rage that she later pub­lished a study that showed that yes, nearly 90 per cent of women with ovar­ian cancer had symp­toms prior to di­ag­no­sis.

For Syl Freed­man, her en­dometrio­sis di­ag­no­sis was the start of a ca­reer in ad­vo­cat­ing for the endo com­mu­nity. She founded En­doac­tive and hosted Aus­tralia’s first en­dometrio­sis con­fer­ence. She was in­stru­men­tal in push­ing for – and se­cur­ing – Aus­tralia’s first na­tional plan for en­dometrio­sis. Now she’s get­ting her PHD in medicine so she can au­thor a study of women be­ing told to get preg­nant to cure their en­dometrio­sis. “I started get­ting this pain when I was 11, and that’s when my doc­tor first said to me, ‘When you have a baby, it will go away.’ I was 11,” says Freed­man. “At the mo­ment, I only have anec­dotes, and even though I’ve been telling doc­tors about this for years, they need jour­nal ar­ti­cles in ap­pro­pri­ate med­i­cal pub­li­ca­tions to be­lieve me. So I de­cided to be­come an aca­demic and pub­lish my find­ings in a med­i­cal jour­nal so they’d take me se­ri­ously.”

I ask each of the doc­tors and re­searchers I talk to if things are get­ting bet­ter. Mostly, the an­swer is a qual­i­fied yes. For Freed­man, things are im­prov­ing be­cause she’s push­ing for them to do so. For Pain­aus­tralia’s Ben­nett, things are get­ting bet­ter be­cause, from July, each Aus­tralian will have an on­line health record that al­lows doc­tors to track di­ag­noses, med­i­ca­tions and surg­eries in pa­tients. De­spite the con­tro­versy sur­round­ing it, Ben­nett hopes this will lead to fewer de­lays in di­ag­noses and bet­ter pain man­age­ment. There’s also the an­nounce­ment of the first na­tional ac­tion plan on chronic pain, which Ben­nett hopes will re­move its stigma. There’s no word yet on whether the plan will ad­dress gen­der im­bal­ances. For Saini, things are get­ting bet­ter be­cause there are more women in sci­ence. “Ques­tions are be­ing asked that were never asked be­fore,” she says. And for Van­cail­lie, pa­tients are chang­ing the game by ad­vo­cat­ing for them­selves. “Things are chang­ing, but mainly, it’s with the pa­tients. Dr Google, for all its faults, has ac­tu­ally em­pow­ered them. They read up on their symp­toms and con­nect the dots, then they come and see us and we val­i­date what’s go­ing on with them.” He sighs and shakes his head. “It’s not per­fect, but it’s help­ing. You know, to me, pain is sim­ply un­ac­cept­able.”

WORDS BY LAU­REN SAMS

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