Lisa scans the room for an empty seat.
Save for the disembodied voices of unseen nurses summoning patients into exam rooms, the place is excruciatingly quiet.
Everyone is here for the same reason: Shecan’t get pregnantwithout a doctor’s help.
Yet with so much in common, no one speaks or even acknowledges one another.
The few who are accompanied by husbandsthey don’t talk, either.
It’s 8 A.M., but already she’s exhausted.
And she’s scared, hoping for joy but preparing for heartbreak.
Her big brown eyes are on the verge of tears.
“I never imagined it would come to this,” she says.
They’re paying $1,600 to sublet a studio apartment rather than tell family what they are doing.
They share this experience with SELF under an agreement to print only their middle names.
Lisa was still young, and both she and Jackappeared to be in perfect health.
Lisa phoned Jack, and together but apart, they each closed their office door and sobbed.
That night, they huddled together in their bed, lights off, ringing phone ignored.
“We were in avery dark place,” Jack remembers.
They began avoiding friends, canceling plans and not making new ones.
Lisa was left heartbroken and angrynot least at herself.
I wondered, Why is my body betraying me?
Why won’t it do what it is supposed to do?"
One in eight American couples will experience infertility, and 1.1 million women will undergo treatment this year.
“There’s a feeling of despair and loss that you just can’t quantify.
“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.
Women’s silence hurts more than themselves.
It ensures that infertility remains an anonymous epidemic, with less funding and research than othercommon medical problemsreceive.
Infertility activists, a beleaguered few, struggle to find allies.
“Because we have so little patient advocacy, we have so little progress.”
(Procedures using donor eggs do betterthe failure rate for those is 37 percent.)
But it is debilitating.
Breast cancer has its pink ribbon.
AIDS has its walks, multiple sclerosis its bike-a-thons.
Infertility treatment isn’t always about success.
That’s why it needs more recognition and funding, so people can get help.
But no one wants to recognize the failure.”
“Infertility is wherebreast cancerwas in the 1970scompletely in the closet.”
She’s undergoing fertility treatments again in hopes of conceiving a third.
“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.”
“Everyone relates to cancer and is supportive ofhelping cancer patients,” she says.
“For the average fertility patient, there is no united front.”
And on a deeply personal level, friends and family can wound with their words.
“They ask, Why did you wait?
But they didn’t live my past.
They don’t know if I had bad pregnancies.
People’s prying is insensitive and inconsiderate.”
“For too long, those suffering from infertility have had their condition slighted or even ignored.”
“Part of the problem is that thestressand shame.
“People don’t want to talk about [the money].”
It’s not that patients don’t want to help rally for better insurance and more research.
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.
On day 5 of Lisa’s IVF cycle, snowstorm warnings loom up and down the East Coast.
“We’re not terrible people,” Jack says sheepishly.
“Logistically, it’s getting harder not to tell people, especially our families,” Lisa adds.
Lisa feels close to the edge.
She even confesses to feeling jealous of women in her support group who have miscarried.
For us, it’s been two and a half years and nothing.”
The longer the process drags on, the more uncomfortable they tend to becometalkingabout it to other people.
“Isolation is a defense mechanism against overload.
It isn’t necessarily a good thing, but it’s what infertility patients do to protect themselves.”
“It was so easy for them,” says Elbaum, an attorney in New York City.
My way of dealing with it was not talking about it."
“I hated being jealous,” she says.
‘What can I do for you?'"
Sometimes, it’s easier to share intimate details with strangers.
We still need to have real relationships."
“Denial is a factor,” Domar says.
“Walking into that room, you label yourself as infertile.
That’s hard for a lot of people.”
Research also reveals that patients who get psychological support often feel less distress about treatment.
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.”
“Where are the tens of thousands of patients affected by this disease?”
Congresswoman Debbie Wasserman Schultz (DFla.)
asked the group of Resolve members gathered on Capitol Hill for Advocacy Day in June 2009.
But still, said the congresswoman, there should have been more people there in the first place.
“Where are your numbers?”
The women were floored.
They had paid their own way from as far away as Florida and Chicago.
Some had left children at home.
“Her speech was sobering for those of us fighting the fight,” Collura says.
“Somevolunteerswere upset because they had worked so hard just to get those people in the room.
But she was right.”
“I had held my tongue for years,” she says.
“Patients need to start shouting from rooftops.
When patients do take up the cause, it can make a difference.
“My thought was, Yeah, but I wanted to.”
), who went to the CDC.
Of 84,000 chemicals in the workplace, information on reproductive toxicity is available for only a few thousand.
), who reintroduced the Family Building Act, a bill that calls for federally mandatedinsurance coveragefor infertility.
Senator Kirsten Gillibrand (DN.Y.)
has introduced the Family Building Act to the Senate.
“One person’s passion matters,” she says about Levine.
As the day of Lisa’spregnancytestalso Jack’s 43rd birthdayapproaches, her anxiety skyrockets.
She’s been in email contact with her support group but no one else.
Jack’s birthday arrives, and Lisa is able to give him the gift he wanted most.
“We are so happy and relieved!”
she writes in an email to SELF after receiving news of herpositive pregnancytest.
“I (almost) feel like a normal person for the first time in two years.”
Who else hears the happy news?
Her acupuncturist and pregnant support group buddies.
As it turns out, Lisa and Jack are having twins.
And finally, after 14 weeks, they tell their parents.
Then again, their parents didn’t ask.
“I think they were just happy that I was pregnant.
They had been worried that we didn’t want kids,” Lisa says.
I didn’t realize how depressed I was and worried about what someone would say.
Truly, I didn’t realize how pervasive the pain was until I didn’t feel it anymore.
It’s like the world has gone from black and white to color.”
But now that she has what she wants, will she help fight for the cause?
Once I have twins, I’ll have a lot less free time."
Photo Credit: Jeff Sheng
