This Woman Has a Secret
29, Jun 2011 04:08
Breaking the Silence on Infertility
One in eight American couples will experience infertility, and 1.1 million women will undergo treatment this year. That most won't talk about it makes it that much more painful: A recent survey of infertility patients reveals that 61 percent hide the struggle to get pregnant from friends and family. More than half of the patients included in the survey, conducted by pharmaceutical giant Schering-Plough, reported that it was easier to tell people they didn't intend to build a family rather than share their troubles. "It's almost impossible to convey what it's like to people who haven't gone through it," Jack says. "There's a feeling of despair and loss that you just can't quantify. So much weight is on the line, so many questions about genetics and identity and what it means to pass that down—or not."
每美國夫妻中每八對就有一對不孕, 目前有一百一十萬多名婦女接受不孕的治療. 大部份的不孕夫妻都不會和別人討論這些事, 但是不說卻讓他們更為痛苦, 研究顯示, 有百分之 61的夫妻會隱藏他們在懷孕這件事做的掙扎與努力. Jack 說, "這件事根本沒辦法跟沒有親身經歷的人說, 那種絕望和失落感是無法言說的, 我們投注了非常多的心力在這事上, 成功與否和我們的遺傳和自我認同又息息相關."
Having difficulty getting pregnant can cause as much grief as losing a loved one, says Linda D. Applegarth, Ed.D., director of psychological services at the Perelman Cohen Center. "But it's different. It is chronic and elusive," she adds. "There's a fear that life will be eternally empty. Some feel a sense of damage and brokenness; it goes to the heart of who they are." The result is the dread and shame that Applegarth sees in her waiting room. "Patients slink around and sit in corners because they don't want to see anyone they know from their work or social circle," she says, "even if it would mean they would know someone going through the same thing." Only 5 percent of patients use the psychological support services their clinic offers, despite data showing how helpful they can be."
心理中心的主任 Linda 說, 無法懷孕造成的哀傷, 不下於失去一個摯愛的人. "但是它又不同, 這種哀傷更長久卻更無法言說. 它的背後有一種恐懼, 我們怕日後的生命會是空洞的. 有人有一種破損感, 覺得生命是損壞的, 那直接影響到他們生命的核心." 這樣的結果就是不孕的候診室中看到的恐懼和羞愧. "病人都坐在個自的角落..."
It's a strange dichotomy: How can a health issue that gets so much ink be shrouded in silence? We've read about the "Octomom" freak show and how the proliferation of multiples, linked to the rise in fertility treatments, drains the health care system. But rarely is the average person made aware of the frustration that 12 percent of women of childbearing age endure trying to make a baby. Nor do most people realize that a majority of infertility treatments fail; in 2006, 57 percent of IVF cycles using women's own eggs failed, according to the Centers for Disease Control and Prevention (CDC) in Atlanta. (Procedures using donor eggs do better—the failure rate for those is 37 percent.) A study from Harvard Medical School in Boston shows that women who have difficulty getting pregnant can be as depressed as those who have major heart problems or cancer.
為什麼一個對 "八胎媽媽" 這麼注目的社會, 卻對不孕這個問題這麼漠視呢? 大部份的人不知道, 有 百分之12 想要懷孕的婦女有不孕的問題. 也很少人知道, 大部份不孕的治療都以失敗收場, 在 2006 年中, 有百分之57 的試管嬰兒失敗了. 哈佛大學的研究指出, 無法生育給不孕婦女所帶來的憂鬱, 比起有心臟方面毛病或癌症的病人有過之而無不及
But it is debilitating. And some activists argue that infertility desperately needs the kind of awareness effort that helped bring cancer out of the shadows two decades ago. Breast cancer has its pink ribbon. AIDS has its walks, multiple sclerosis its bike-a-thons. Resolve does sponsor an awards gala honoring achievement in the field, but it draws primarily doctors and other professionals from the infertility world, not patients, and most important, it raises no money. Complains one Resolve member who walked out of last year's event, "Everyone gets up and tells their success stories. Infertility treatment isn't always about success. And that's the problem with how infertility is being handled; as with any other disease, some people won't be cured. That's why it needs more recognition and funding, so people can get help. But no one wants to recognize the failure."
很多人倡議, 不孕症現在最需要的是大眾對它的認識, 類似二十年前把癌症帶入大眾的認識那種運動. 乳癌現在有它的粉紅色絲帶了, AIDS 有它的活動和團體, 關節炎有它專屬的腳踏車運動節, 等等. 這些活動對於成功抵抗這些疾病的人是一種鼓舞, 但更重要的是, 它帶來研究資金和團隊, 讓大家可以集氣研究如何對抗這樣的疾病. 但是不孕症又有不同, 在癌症或愛滋的活動中, 你可以站起來分享你的成功的故事, 但是這也是不孕症的問題, 和很多疾病一樣, 有些不孕的夫婦到頭來是不會被 "治癒" 的, 但也是因為如此, 它更需要更多的認知和資金, 更多的幫助. 可是沒有人願意去接受失敗.
Because no one wants to discuss infertility, "nothing gets done about it," says Lindsay Beck, founder of Fertile Hope, a program run by the Lance Armstrong Foundation in Austin, Texas, that supports cancer patients whose treatments threaten their fertility. "Infertility is where breast cancer was in the 1970s—completely in the closet." Beck's treatments for her tongue cancer and its recurrence aged her reproductive system by possibly a decade; she ultimately had five IVF procedures and two children. She's undergoing fertility treatments again in hopes of conceiving a third. "In my experience, it's a much lighter atmosphere in the cancer waiting room than in the IVF waiting room," she says. "Cancer patients talk about antinausea drugs and what worked for them. They look at each other as a means of support. For some reason, fertility patients tend to ignore each other in the waiting room." Beck says that "the cancer card" makes it easier for women to talk about their difficulties trying to get pregnant—and to find financial assistance to pay for treatment—after chemotherapy, radiation or both have ravaged their body. "Everyone relates to cancer and is supportive of helping cancer patients," she says. "For the average fertility patient, there is no united front."
這一段大意: 不孕和1970 年代的乳癌一樣不能出櫃. 連在癌症中心的氣氛都比在不孕中心的輕鬆, 在癌症中心的病人會互相交換心得或資訓, 然後在不孕中心的人卻常假裝各忙各的, 上網, 簡訓等等, 很少互相交流
Even the health care providers and pharmaceutical companies that support infertility patients struggle with the best language to use and whether to label infertility a disease—something that conveys its seriousness but could make some patients feel more stigmatized and broken. There are any number of reasons some women don't conceive easily: age, endometriosis, polycystic ovary syndrome and their partner's low sperm count, to name a few. Yet regardless of the why or how, "infertility is a disability," says William Gibbons, M.D., president of the American Society of Reproductive Medicine and director for Reproductive Endocrinology and Infertility at Baylor College of Medicine in Houston. "For too long, those suffering from infertility have had their condition slighted or even ignored."
還有, 醫療機構和保險也不知道怎麼定位不孕. 有太多可能都會造成不孕, 從精子不足到年紀等等. 但是最後世界衛生組織終於把不孕定義為一種病, 把不孕視為一種疾病結保險公司才會開始辦理治療和理賠
Last November, the World Health Organization in Geneva brought some clarity when it defined infertility as an actual disease. "Part of the problem is that the insurance industry considers infertility akin to cosmetic surgery; having a child is deemed by many insurers to be something men and women would like, but it's not necessary for their health," Dr. Gibbons says. "Having an internationally recognized health organization acknowledge infertility as a disease is a baby step that hopefully will pave the way for insurers and other providers to improve coverage." Scant insurance coverage not only marginalizes patients but also adds to their stress and shame. "Women often feel humiliated about having tried so hard with nothing to show for it, especially if the process has left them bankrupt," Beck says. "People don't want to talk about [the money]."
去年十月, 世界衛生組織終於把不孕定義成一種疾病了. Gibbons 醫生說, "不孕症的一部份問題在於保險業把它當作像美容手術一樣, 可有可無. 有小孩是女人想做, 而不是非做不可的事." 保險對治療不孕微乎其微的補助不但邊緣化病人, 也增加他們心理的壓力和羞恥感. "婦女常覺得做了這麼多努力, 尤其是幾乎走到破產邊緣了, 卻沒有什麼成果, 感到十分的羞愧. 於是大家根本對錢不願再談了."
It's not that patients don't want to help rally for better insurance and more research. But treatment can be so emotionally, physically and financially enervating that, in the middle of it, they have neither the time nor the energy to invest in activism. If treatments succeed, or patients adopt, they are then busy with young children. However someone resolves her infertility, the tendency is to want to put her struggles behind her. "People want to forget," says Collura of Resolve, whose activities include local support groups for infertile couples nationwide. "We do our damnedest to instill in our members that they need to take a stand and help the cause or the same thing is going to happen to the women who come after them."
並不是病人自己不願主動和立法與保險業抗爭爭取權益, 因為治療不孕在在 身心和財力上都需要極大的投資, 所以病人根本沒時間 (後面它提到, 在治療過程, 打針控制賀爾蒙照卵泡等, 連假日都無法出遊, 更何況去國會山莊遊行抗議). 在治療中, 他們沒有時間也沒有力氣去做這件事, 如果成功了, 或者有些父母選擇了領養, 他們馬上要忙新生兒, 也不會有時間. Collura 說, 很多人都想忘記這個過程. 他們的不孕組織最大的努力, 是提醒會員要為這事出聲, 以免日後的婦女也必須面對同樣的命運.
Infertility treatments can be so intense that even when money is not a factor, "the stress can be too much to continue," says Alice Domar, Ph.D., director of the Domar Center for Mind/Body Health at Boston IVF. Last year, researchers at Harvard Medical School found 34 percent of patients younger than 40 with insurance for at least three IVF cycles dropped out after only one or two; 68 percent of patients older than 40 gave up before exhausting their coverage. The process swallows lives; women become slaves to their monthly cycles, often unable to leave town even for a weekend getaway due to daily monitoring for hormone levels and egg counts. When month after month a couple fails to get pregnant, their lives stall and the question of whether or not their family will expand looms over decisions about the car they buy, the house they live in, the clothes they purchase
不孕的治療實在太浩費心力, 就算錢不是問題, 壓力也足以讓很多夫妻沒有辦法繼續下去. 去年來說, 哈佛大學研究中心發現四十歲以下有保險的人, 在 3 次 IVF 寮程後, 有百分之 34 終止寮程, 四十歲以上的有百分之 68 在保險未達限度之前就停止寮程了. 試管的療程會吞噬人整個生活, 在其中的婦女成為她們每個月週期的奴隸. 因為每天和每週的賀爾蒙療程和照卵泡, 很多女人無法週末出遊. 當月復一月無法懷孕時, 她們的生活停滯了, 而能不能懷孕, 家庭會不會多一個人這件事不但決定生活的一切, 從要買什麼車, 住什麼房子, 到買什麼衣服
(後面一段提到, 很多女人因此有嚴重的自尊自信心的危機, 覺得很羞愧, 做這麼多努力, 付出那麼多錢, 卻沒有任何成果可以拿給關心他們的人看, 但是當別人安慰他們時, 怎麼做都是不對的, 因為他們自己對這件事的情緒己經夠大了, 沒辦法再面對別人對這件事任何情緒的反應了, 最後變成一個惡性循環, 生活越來越小越孤立, 變成只有生(不出)孩子這件事)
Domar remains frustrated that only about 100 of Boston IVF's 2,500 annual patients seek mind/body services from her center. "Denial is a factor," Domar says. "Walking into that room, you label yourself as infertile. That's hard for a lot of people." Although one of the greatest insults to an infertility patient is to tell her she should "just relax," studies show stress does make women less likely to ovulate—and that there are ways they can feel more calm. A Harvard Medical School study published in 2000 established a link between lowering anxiety and improved pregnancy rates in women who had been trying to conceive for between one and two years. Research also reveals that patients who get psychological support often feel less distress about treatment. And if their treatment fails, Domar says, they are quicker to build their family in other ways, such as donor eggs or sperm or adoption. Domar shared with SELF preliminary results of new research she hopes will inspire more patients to seek help: In a small study of 97 Boston IVF patients younger than 40, women who had participated in 5 to 10 mind/body sessions were 160 percent more likely to get pregnant after a single IVF cycle. And more than two thirds of women with a clinical diagnosis of depression got pregnant after these sessions, whereas none of the depressed women in the control group conceived. The meetings teach relaxation techniques to ease anxiety and cognitive-behavioral strategies to fight depression. "These results can absolutely be replicated," Domar says. "Isolating oneself during fertility treatment is not helpful to getting pregnant."
不孕醫療人員指出, 很少做不孕治療的人會同時接受心理輔導. 雖然叫不孕的人"放輕鬆" 也許是個污辱, 但是研究顯示壓力的確是造成很多婦女沒有排卵的原因. 哈佛大學研究指出, 降低焦慮可以提高懷孕機率. 另一個研究指出, 在 97 個四十歲以下做試管的的病人中, 有參加 5到10 個心靈成長課程的人有百分之160 的機會更容易在第一次試管就成功, 有 2/3 有憂鬱症的病人在這些成長課程後受孕成功, 而沒有參加課程的憂鬱病人則無一人受孕