COVER STORY Infertility challenges aren’t just physical

July 21, 2015

By The CJN Admin

When Rachel was struggling to get pregnant and suffering through infertility treatments, the toll it took on her physically was only half the battle.

“Seeing people with babies, seeing people pregnant, it was very, very hard for me,” she recalled.

“In the Jewish community, everyone wants to know if you’re pregnant, and they look you up and down, they make you feel uncomfortable. You’re going to shul, you’re going to events, and being in that tightknit community, it was very awkward and hard for me.”

Rachel (not her real name) said she didn’t think she would ever have trouble conceiving because her menstrual cycles were regular, but after trying for seven months with no luck, she decided to seek medical advice and have her hormone levels checked.

After discovering a hormonal irregularity, Rachel began cycle monitoring, and later, intrauterine insemination, but when these approaches led to a miscarriage and an ectopic pregnancy – a dangerous abnormality that occurs when an embryo implants outside the uterus – she and her husband decided to try in vitro fertilization (IVF).

After the first IVF cycle at the age of 30, she conceived, and now has an infant daughter.

But beyond the physical challenges Rachel faced in trying to get pregnant, she said the social aspect of infertility was also a big stress on her and her husband.

“My friends would get pregnant and not tell me, and I would find out through Facebook, and when I would say, ‘Why didn’t you tell me?’ I got every single excuse under the sun. I was starting to be treated differently, I wasn’t invited to kids’ birthday parties because I didn’t have a kid, so I felt like the odd one out. All my friends were having babies and I wasn’t included in that,” she said.

She said she also got a lot of unsolicited advice from well-meaning friends and family.

“My boss knew, and she said to me, ‘Well, why don’t you just adopt? Don’t even go through all of that.’ That didn’t sit well with me,” Rachel said.

“I had people telling me to go to the mikvah [a ritual bath], it will help you get pregnant. Well, I tried that. It didn’t work. I was told go to a bris and hold the baby – that will help you. That didn’t work.”

She said although her family was very supportive, she felt a lot of pressure and negativity from her in-laws.

“My mother-in-law thought something was wrong with me. She didn’t believe what was going on and thought it was ridiculous and would say, ‘How come you can’t get pregnant? I’ve never heard of this before.’”

For 31-year-old Ben Feferman, it took him and his wife, Abby, some time to feel comfortable enough to speak openly about their three-year struggle to conceive.

“After about a year and a half, we started seeing a fertility doctor, and it was still unsuccessful and very challenging, very demanding – all the tests and injections – it really is a full-time job,” Feferman said.

Feferman and his wife were told they had unexplained infertility, a diagnosis given to patients who don’t exhibit any physical or hormonal reproductive abnormalities.

“That may have been even a little harder because there was no answer,” he said.

About a year and a half into their infertility treatment, they learned about a Toronto-based, non-profit organization called Small Wonders, which helps Jewish couples cope with infertility by offering financial, emotional, medical and halachic support.

“But we were too embarrassed, we weren’t ready to approach an organization and say, ‘You know what, we’re going through infertility and we don’t even know what we need. We don’t know if we need someone to talk to, if we need medical advice. We don’t know if we need financial help,’” he said.

But eventually, they reached out to Denise Levin, Small Wonders’ couples director.

Levin explained that while the organization, founded in 2002, funds up to 50 per cent of treatment costs for up to two babies – which can cost upward of $15,000 per IVF cycle – Small Wonders is also a source of support and guidance.

“We offer all our other services, like emotional support where we hook people up for peer-to-peer support, professional support – we try to find them someone to speak to if they need to,” Levin said, adding that the Bathurst Street office has a discreet back entrance for those concerned about privacy, as well as a lounge area with private computers for research.

There is another organization that Jewish couples can turn to for financial assistance called Jewish Free Loan, which offers interest-free loans.

Although the Fefermans’ story ends happily – they welcomed healthy twin boys a couple months ago through IVF – he expressed frustration about the cost of fertility treatments in Ontario.

“If you need to terminate a pregnancy for whatever reason, the government covers the cost, but if you want to create a life, if you want to get pregnant, there is no help,” he said.

Jan Silverman, a reproductive health educator and counsellor, and an advocate for people who are struggling with infertility, said her passion is to speak for “those who are afraid to get on a soap box and say this isn’t fair… It’s not fair in terms of funding. It is not fair that what an infertile person needs to make their family can be ridiculously expensive.”

Silverman said the Ontario government announced last year that it would fund one IVF cycle per couple, but has yet to make good on the promise.

“The prices can be prohibitive without the government recognizing it and saying, ‘Let’s regulate, let’s make it fair, let’s make it comfortable,’” she said.

“How long do you wait when your own biological clock is ticking louder and louder?”

Anxiety, helplessness and desperation are feelings Silverman is very familiar with, having experienced them herself when she was trying to conceive 35 years ago.

“I’m a counsellor, but I started in the field because I am infertile and I was infertile before anyone was talking about it… I started as a grassroots activist because no one was talking about it 35 years ago. No one was doing anything about it, and women with fertility issues were left completely on their own, afraid, ashamed, embarrassed to talk about it,” Silverman said.

“The options are so much greater now than they were then, but what hasn’t changed, remarkably, is there is still that sense of not talking about it, of shame, of embarrassment, of silence.”

Rachel said there were times she would bump into religious people she knew at the clinic where she was being treated, and they would often act embarrassed or awkward.

“And there is nothing to be embarrassed about. You’re getting the best care, so what more can you ask for? If you need a little bit of help, then you need a little bit of help,” Rachel said.

She suspects that those who associate feelings of shame with infertility do so because they think that conceiving a child through IVF is unnatural.

But Rachel’s advice for those who are having difficulty getting pregnant or are close to someone who is going through infertility, is to educate themselves.

“The science behind it is really amazing. I was able to watch from the moment they retrieved my egg, to the fertilization, to the embryo being on the screen on video, to it being implanted. I got to watch. It was the coolest thing ever, and being able to watch was very special to me,” Rachel told The CJN, as her four-month-old daughter napped in a stroller beside her.

Levin said that at Small Wonders, they understand how difficult it is to talk openly about it, and to be surrounded by peers, friends and family who are having babies.

“We have people who can support our clients and try to tell them, ‘We’ve been through it, and this is how I got through it…’ To know you are not alone is very important.”

Levin’s advice is to seek support, find a good team of doctors and lean on your spouse.

“Make sure you are mentally prepared for the road ahead. It’s a difficult one. It changes the relationship between yourself and your spouse, and that’s very important to be cognizant of, and [you have] to focus on that because you need the support of a spouse when you go through this."