FIGHT­ING IN­FER­TIL­ITY

The pain of empty arms

The Advertiser - SA Weekend - - FRONT PAGE - words liz walsh

HER arms are empty and they ache with a pain that she strug­gles to put into words. He can do no more than put his arms around her, try­ing to ease her bur­den. But for the out­side world, they put on their bravest faces. They of­fer con­grat­u­la­tions for other peo­ple’s preg­nancy an­nounce­ments, they smile at ba­bies’ chris­ten­ings, they live in the mo­ments that ex­ist be­tween hope and fail­ure.

They live with words that haunt them from month to month: Bar­ren. Child­less. In­fer­tile. And of­ten, they do so si­lently. Be­cause this is not some­thing you tend to talk about openly. Or so it once was. Slowly, in­fer­til­ity is turn­ing from taboo into a sub­ject that is open for dis­cus­sion. Peo­ple are pub­licly talk­ing and writ­ing and ex­press­ing the loss and pain of in­fer­til­ity as a way to sup­port oth­ers in sim­i­lar sit­u­a­tions.

Take, for ex­am­ple, Aus­tralian tele­vi­sion pre­sen­ter Jes­sica Rowe, whose long strug­gle to con­ceive through IVF, has formed part of her book Is This My Beau­ti­ful

Life?, which was pub­lished by Allen & Un­win in Au­gust.

She wrote about how, at the age of 35, her body was let­ting her down. “I was shocked at how hard it was to be­come preg­nant ... I had imag­ined hav­ing a baby would hap­pen quickly, eas­ily and with lit­tle fuss. It was nat­u­ral af­ter all, wasn’t it?”

Rowe talks openly about be­ing di­ag­nosed with poly­cys­tic ovar­ian syn­drome.

“Ev­ery­one around us was preg­nant or had young chil­dren,” she wrote.

“Jeal­ousy and re­sent­ment sat heav­ily in my stom­ach each time a couple told us their good news ... Forget both of us be­ing left on the shelf: now I was go­ing to be the only one with­out a baby. The anger bub­bled away in­side of me.”

When a couple starts try­ing to make a baby to­gether it is a time of im­mense ex­cite­ment and ap­pre­hen­sion. But when that try­ing turns into months – some­times years – of no baby that ex­cite­ment turns into fear and sad­ness and long­ing.

Tech­ni­cally, in­fer­til­ity is de­fined as the in­abil­ity to con­ceive a preg­nancy af­ter 12 months of un­pro­tected sex. And ac­cord­ing to IVF Aus­tralia, it af­fects one in six Aus­tralian cou­ples of re­pro­duc­tive age.

In 40 per cent of cou­ples the cause of in­fer­til­ity is found to be the fe­male re­pro­duc­tive sys­tem, 40 per cent are at­trib­uted to a sperm fac­tor and a third have a com­bi­na­tion of both male and fe­male fac­tors. But the num­bers can’t ex­plain away the tears and the heartache of what in­fer­til­ity ac­tu­ally feels like.

Emily Har­ris Adams is a 28-year-old Amer­i­can poet and au­thor.

Adams was 21 when she mar­ried her hus­band Trent and seven years ago, they beamed on their wed­ding day, dream­ing of their fu­ture; a fu­ture that – un­re­servedly – in­volved chil­dren.

“Trent had al­ways wanted a hon­ey­moon baby but I wanted to wait a year,” she says over the phone from her home in Utah. “We waited a year and were on birth con­trol and nei­ther of us thought we would have any trou­bles. But about seven months into try­ing, I thought some­thing must be wrong.

“Turns out both my hus­band and I are in­fer­tile. My hus­band has a low sperm count and I have a cock­tail of poly­cys­tic ovary syn­drome, hy­pothy­roidism and en­dometrio­sis.

“It took a while for the doc­tors to let us know that if we wanted to ever have bi­o­log­i­cal chil­dren, we would have to do in vitro. Be­ing told we might never have chil­dren, the floor com­pletely dropped out from un­derneath us. I re­mem­ber sit­ting in that doc­tor’s room think­ing … the world out­side of it is end­ing. It was dev­as­tat­ing.”

And so, to deal with her loss, she started writ­ing. Both poetry and es­says came flood­ing from her and they have been com­piled into a book – For Those With Empty Arms: A Com­pas­sion­ate Voice For Those Ex­pe­ri­enc­ing In­fer­til­ity – that hit Aus­tralian bookstores in Septem­ber.

As soon as the di­ag­no­sis of in­fer­til­ity came, Adams hit rock-bot­tom, but it wasn’t what she ex­pected.

“Rock-bot­tom isn’t a place where there is weep­ing and wail­ing and gnash­ing of teeth,” she says. “It’s a place of noth­ing. Noth­ing hap­pens. I can’t write much about it be­cause it would be about ... how time moves a lot like air cur­rents if you sit still for long enough, and about how strange it is to come to your­self and re­alise that the only thing that has changed is that there’s more to do and less time to do it.

“One of the things that really helped my hus­band and I were hav­ing goals that didn’t

in­clude be­com­ing par­ents. I started writ­ing again. My hus­band got back into work­ing out. Hav­ing those goals, took us out­side of de­spair,” she says.

SOUTH Aus­tralian pub­lic re­la­tions con­sul­tant David Rawl­ings was in his late 20s when he and his wife re­alised they couldn’t con­ceive. It was the mid1990s, and the first time they en­tered an IVF clinic, they were handed a manila folder full of in­for­ma­tion – all of it pro­ce­dural and med­i­cal and 98 per cent aimed at the woman.

But all of that in­for­ma­tion couldn’t help ex­plain what it felt like to be go­ing through the ex­pe­ri­ence. So, Rawl­ings, too, wrote a book – Swim­ming Up­stream: The Strug­gle

To Con­ceive – first pub­lished in 2006 and which he co-au­thored with SA fer­til­ity coun­sel­lor Karen Looi. It was ground­break­ing be­cause it fea­tured the male ex­pe­ri­ence, which is of­ten the over­looked and un­ex­plored side of in­fer­til­ity.

“Speak­ing as a guy – and a lot of guys I spoke to for the book said to me – it’s hard watch­ing your wife cry at a chris­ten­ing, and it’s hard watch­ing friends and fam­ily do what you can’t,” he says.

“Speak­ing on be­half of the guys I’ve spo­ken to and in­ter­viewed for the book, it’s dif­fi­cult to try and sup­port your part­ner when she’s ex­pe­ri­enc­ing a lot of grief. You jump through all of th­ese med­i­cal hoops, but it seems like no­body else has to.

“One guy I in­ter­viewed that said his wife had given up go­ing to work on the days when there was an an­nounce­ment of a baby be­cause she just couldn’t do it.”

Rawl­ings’ per­sonal ex­pe­ri­ence was that he and his wife had un­ex­plained fer­til­ity – af­ter the gamut of tests, no ex­pla­na­tion for their child­less­ness could be found.

“We’re one of the mag­i­cal 10 per cent,” he says of their un­ex­plained in­fer­til­ity. “It meant that we got to dodge the blame game that some cou­ples go through.”

Blame is a dif­fi­cult sit­u­a­tion in in­fer­til­ity, be­cause, sim­ply, some­one usu­ally is re­spon­si­ble. But re­spon­si­ble is prob­a­bly the wrong word; no one does this on pur­pose.

Adams ex­plains in her book that she and her hus­band were de­ter­mined not to blame one an­other for their in­fer­til­ity.

“We re­as­sured each other even if we had known the ex­tent of the trou­bles we would face to­gether, we would still de­cide to be mar­ried,” she says. “We are in­fer­tile. Not just one of us. We de­cided long ago we share ev­ery­thing: money, fur­ni­ture, books, cars. We are a unit; ev­ery­thing we own is shared ... The blame is ours; we own it like ev­ery other pos­ses­sion.”

Perth couple, Kylie and Glenn Doust have also played the emo­tional roulette that is IVF af­ter two failed va­sec­tomy re­ver­sal oper­a­tions and then dis­cov­er­ing Kylie’s in­fer­til­ity. But, the IVF they un­der­went over a decade ago was ex­pen­sive, ex­haust­ing and iso­lat­ing and they de­cided to get off the roulette wheel.

“We did nine trans­fers … but the drug treat­ments that are in­volved, the dis­rup­tion to your own hor­mone bal­ance, the phys­i­cal side-ef­fects; you be­come very tired, very bloated, very ir­ri­ta­ble, the pro­ce­dure it­self of egg re­trieval is very painful and I took a while to re­cover from that,” Kylie Doust, to­day a 48-year-old phar­ma­cist, says.

“And it’s really just a roller-coaster of emo­tion be­cause you hope and then you’re dis­ap­pointed.

“It be­comes a roller-coaster and it’s not only ex­pen­sive, but it’s iso­lat­ing be­cause all your friends are fall­ing preg­nant and you’re not; it seems you’re an is­land of bar­ren­ness in a sea of fer­til­ity.

“We came to the de­ci­sion al­most si­mul­ta­ne­ously that we’d had enough.” Doust has also writ­ten a book – From

Here To Ma­ter­nity, pub­lished in 2013 – which is a per­sonal ac­count of her IVF, in­fer­til­ity and ul­ti­mately the adop­tion of her two boys from South Korea, Harry and Jack, now aged 13 and 9.

“We have adopted two beau­ti­ful boys, but even now, there are some things that hap­pen and the grief comes back,” she says. “There’s noth­ing like an ac­ci­den­tal preg­nancy to ram home the fact that they can and you can’t.

“It might be the thought of my sons hav­ing chil­dren, or the sight of a preg­nant woman on the street and the thought that I never got that; I never got to ex­pe­ri­ence that. And it’s loss, it will al­ways be a huge loss. But an im­por­tant thing to re­mem­ber is whether or not you be­come a par­ent af­ter in­fer­til­ity, (a baby) doesn’t heal all the wounds. The grief will al­ways be there, but it’s how you man­age the grief and move for­ward.”

Rawl­ings – who since writ­ing his book, has be­come chair­man of Ac­cess Aus­tralia; an or­gan­i­sa­tion that of­fers in­fer­til­ity in­for­ma­tion, sup­port and re­fer­rals to its 40,000-odd mem­bers – is now a fa­ther of three, all of whom were con­ceived with IVF. “But IVF is not a guar­an­teed so­lu­tion, it is not a baby su­per­mar­ket and you rock up with a trol­ley … it’s a process,” he says.

And in that process, he ac­knowl­edges, there comes a sense of help­less­ness, not be­ing in con­trol.

“The help­less­ness is deep rooted and it’s in your face ev­ery day …. just when you had a failed cy­cle of IVF, is when the sis­terin-law an­nounced she’s preg­nant with num­ber four and they weren’t even try­ing,” he says. “The word in­jus­tice comes up. You’re not drink­ing, you’re eat­ing well, you’re sleep­ing well, you’re not smok­ing, but then some­one else gets preg­nant and you don’t.”

Some­times that help­less­ness can lead to su­per­sti­tion. Rawl­ings re­calls while in­ter­view­ing three cou­ples for the book, one of them said off-the-cuff they were go­ing to wear or­ange un­der­wear from then on. “And guess what? They got preg­nant. And what do you think the other two cou­ples did? And as they said: ‘We feel ridicu­lous’. But I said to them: ‘Where’s the proof (or­ange un­der­wear) didn’t work?’”

BUT de­spite the avail­able med­i­cal in­ter­ven­tion, not all in­fer­tile cou­ples will end up with a baby to fill their empty arms. And the re­al­ity of re­main­ing child­less means dif­fer­ent things to dif­fer­ent cou­ples. Some will sep­a­rate, oth­ers will stick to­gether, but it al­ways means liv­ing life in a way you didn’t ex­pect.

In Empty Arms doesn’t end with Adams’ happy news – that her bub­bly, IVF­con­ceived twins Marie and Guyer will be cel­e­brat­ing their first birth­days in a couple of months. In­stead, the book ends with­out kids, but with hope; hope that she can face dif­fi­culty, and de­spite it all, live her life.

But the ques­tion re­mains for some cou­ples: how do you make it through in­fer­til­ity with your re­la­tion­ship and san­ity in­tact?

“Part of that is making sure you’re in­formed and you’re in con­trol of your treat­ment,” Doust says. “You can be­come a bit over­whelmed by the med­i­cal pro­fes­sion and let the doc­tor dic­tate treat­ment, but it’s really im­por­tant with in­fer­til­ity with ev­ery step of the process, you make sure you are ed­u­cated and in­formed and you can be ac­tive in your own treat­ment.

“The other thing is coun­selling. It’s pro­vided free of charge through the clin­ics. So when my best friend fell preg­nant, I could go to (my coun­sel­lor) and cry and rage and not feel I was be­ing self­ish.”

Doust’s ad­vice to oth­ers go­ing through a sim­i­lar sit­u­a­tion is this: “Re­mem­ber that you’re more than what you’re go­ing through. Be­lieve in your­selves be­yond the process. Al­low your­self time to heal af­ter ev­ery dis­ap­point­ment and ev­ery set­back.

“Give your­self the space and the time and the kind­ness to bounce back and to stop and smell the roses. Make sure, ev­ery day you make time for your­self. Re­mem­ber to laugh, re­mem­ber that life it­self is a gift and if you pos­si­bly can, to rise above the sad­ness and frus­tra­tion, even for just a mo­ment each day and be grate­ful.

“Also, to hope. No mat­ter what life holds and no mat­ter what the end re­sult might be, to try to main­tain that lit­tle ker­nel of hope that if you turn the cor­ner you might be sur­prised at what you find.”

For Adams, hope has also been an im­por­tant part of her jour­ney.

“Liv­ing with hope bears a re­mark­able re­sem­blance to just liv­ing,” she says. “Be­fore, I strug­gled to de­feat this prob­lem within me, this evil that loomed over ev­ery ac­tion I took, tainted ev­ery bless­ing I re­ceived, and made ev­ery­thing I owned, felt, and knew seem in­suf­fi­cient.

“(But) I be­lieve that there is a point where sad­ness causes phys­i­cal dam­age. It creates a sick­ness as de­struc­tive as any fever. Day to day life be­came ex­haust­ing.”

Doust says: “I be­lieve strongly in­fer­til­ity is a loss that is equally as deep and lon­glast­ing as the death of a loved one or can­cer or all those things that you can find a mul­ti­tude of books on in bookstores, but there is very lit­tle about in­fer­til­ity. And you can’t heal if you don’t share. Your loss needs to be ac­knowl­edged.”

So from here, hope­fully more words will come …

1 Jes­sica Rowe with hus­band Peter Over­ton and chil­dren Al­le­gra and Giselle

2 US au­thor Emily Har­ris Adams and hus­band Trent with their twins Guyer and Marie 3 SA au­thor David Rawl­ings 4 Kylie and Glenn Doust with sons Jack and Harry

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