join the movement...validate

I'm realizing more and more that I am a voice for infertility. I'm not a loud voice or an especially unique voice or a brilliant voice or anything like that...just a voice. Many issues are close to my heart - the education of women around the world, racism, fighting the stigma surrounding mental illness...the list goes on.

But right now, infertility is my focus. Maybe it's because I'm in the procreating stage of life. Maybe it's because at least every other day, I hear from another woman who is struggling through infertility and loss. We are 1 in 8. We are everywhere.

But I've got to be honest. Sometimes, in moments of self doubt, I wonder whether my cause is worthwhile. Don't get me wrong. It's important. That's for sure. 

But it's not cancer.

It's not AIDS.

It's not domestic violence.

It's not starvation or malaria or sex trafficking. 

It's not killing anybody.

And maybe that's true. Maybe deaths directly related to infertility are extremely rare. Maybe it's never even happened. But if that's our measuring stick - whether anyone dies from it - then aren't our standards pretty low?

Infertility may not steal lives from this earth but it does steal dreams, joy and life savings. It steals emotional stability. It steals friendships and even marriages. Infertility can steal our self esteem, our careers, even our faith.

I remember reading a study that states that the rates of depression and anxiety in individuals suffering from infertility rival those of patients diagnosed with other very serious diseases, including cancer and hypertension. Infertility is an excruciating journey, one that seems to swallow our lives whole. It's surrounded by stigma and ignorance. Infertility diagnoses such an endometriosis can cause debilitating chronic pain. Polycystic ovarian syndrome can make it very difficult to maintain a healthy weight, which in turn can contribute to all sorts of physical problems. In certain cases, miscarriages and ectopic pregnancies can be extremely dangerous to the health of the mother. 

I also want to make the point that people are dying from infertility...our children are dying. After miscarrying our son Ethan at 19 weeks, my doctor told us that my specific infertility diagnosis played a role in his death. I've read many definitions of infertility that include "recurrent miscarriage" as a factor. We, as an infertility community, are losing babies every day.

But despite all of this, I know that many of us remain unconvinced that infertility is a big deal. Insurance companies still put infertile people in a category with those seeking breast augmentations. We still hear things like, "You can borrow my kids any time!" and "Maybe you're just not doing it right." Like I mentioned earlier, sometimes even I, as a self-proclaimed voice for infertility, struggle with doubts about whether I should be focusing my efforts on something...bigger. But earlier today, a thought dropped into my brain that will stick with me forever...

Those of you who have children, grandchildren, nieces and nephews...imagine with me for one awful moment what it would be like to lose them...to cancer...or a car crash...or a senseless act of violence. Imagine the devastation of that loss. Imagine the grief that would sink deep down into your soul and just stay there. Imagine the anger. Imagine the loss of joy, of faith, of purpose.

Now, instead...imagine never having had them at all. Imagine that they were never here, that those precious lives never even existed. That you were never able to touch them, talk to them, read to them, play with them. Imagine that they never had names, never had personalities. Imagine never being able to bury your laughter in their hair or see their picture hanging on your wall. Imagine that they were...nothing. But this isn't just a blank, benign nothingness. This is the type of nothingness that leaves a gaping, aching hole in your heart.

That's what it's like to have infertility. That's what it's like for the countless men and women for whom the most expensive, invasive treatments never work. That's what it's like for families who stay on the adoption waiting list for years and never receive a match. That's what it's like for couples who miscarry over and over. That's what it's like for families who know in their hearts that they were meant to have a large family but every evening, they set the table for only three or four.

That's why it's so important to know that infertility is a disease and that our struggle matters. So if you have someone in your life who is weathering the storm of infertility, please validate their journey. If you don't know how to do that, here are a few ideas to get you started:

• Say something like, "I'm so sorry that you have to go through this. I don't know what it's like to be in your shoes, but I would like listen if you feel like talking."
• Do a little bit of research on your friend's condition. Sometimes infertile people feel overwhelmed by having to explain their disease over and over and over, so it helps if you start out with even the most basic knowledge.
• Vow to never give advice unless your friend specifically asks you for it. Oftentimes, suggestions like "maybe you just need to relax" or "you can always adopt" end up doing more harm than good.

Please, join the movement. Validate the infertility journey and come alongside the ones who walk this path.

What is infertility?

About National Infertility Awareness Week

join the movement...smile courageously

I have been sitting here for a while now, staring at this smudged computer screen, trying to decide whether my idea is over-the-top crazy, borderline worthless, or downright life-changing.

Well, maybe every powerful movement starts out that way…so here goes nothing. This little dream was born a couple months ago as I wrestled with my thoughts and wrote these words…

I sat in the waiting room at the fertility clinic for 50 minutes. Fifty whole minutes. I was getting annoyed. Maybe I'm crazy, but there's a weird vibe in fertility clinic waiting rooms. When you sit in a regular doctor's waiting room, the people around you are there for all kinds of boring reasons - sore throat, ear infection, ingrown toenail...but at the fertility clinic, we're all there for the same exact reason. We want a baby. Really, really bad.

I try so hard not to stare at the people sitting near me, but I can't help it.

There is a woman in scrubs. She is my age and has a kind face. There's no way she's infertile, I think. She looks way too normal.

There's a really tall guy sitting behind me. His wife shows up and they talk quietly together. I want to give them some privacy, but I also kind of (okay, more than kind of) want to hear what they're saying. Are they doing IVF? Is it her issue or is it male factor infertility? Maybe both? How is their relationship holding up under this stress?

Another woman walks through the door, checks in and sits nearby. She leaves her coat on. She looks tired. I wonder how long she's been at this, how many cycles she's done, what meds she's tried, whether she's miscarried.

This happens to me every time I go to the clinic. Give me more than thirty seconds in that waiting room and I get this urge to start talking to the people around me. I want to ask the woman in scrubs how her treatments are going. I want to ask her if she has PCOS, endometriosis or low ovarian reserve. I want to ask about her husband's sperm count and whether they have any friends who have been down this road. I want to ask if they've considered IVF, whether they've gotten second opinions. I want to ask about their insurance coverage and how she's doing with all of this. Like really, how are you doing?

And I want her to ask me.

I want it to be a conversation. I want us to sit next to each other and laugh about the crazy places our men have given us shots and all of those birth control pills we religiously took way back when. I want the tired girl with the coat to hear us and move to where we're sitting, join in with a story about a pregnancy test she was sure was going to be positive...and wasn't. I want to put my hand on hers and tell her I'll say a prayer for her every time she comes to mind. I want to stand up when the nurse calls my name, turn back toward them and smile as I walk away. I want to say, "Nice talking with you."

But none of this happens. We just sit there - on our phones, in our magazines, sinking deeper into the collars of our shirts. We keep our mouths shut because we've heard of HIPAA and there's that sign ten feet from the front desk telling us to stand back to protect each other's privacy.

For some reason, all of this reminds me of the time I ran a marathon. The first thirteen miles were a breeze. Thousands of people lined the streets, cheering for us until their throats were sore. The spectators' roar mingled with my adrenaline to create the sensation that my feet were barely even hitting pavement. It was like I was floating. But then mile fourteen hit. It got really hard. The crowds lessened a bit. The day got hot. And I wanted more than anything to give up.

But there was this lady.

Her race badge said she was in the 70-75 age category and she ran with a limp, almost like she'd had a stroke. She passed me, and as she did, she spoke a word of encouragement that kept my feet moving. I passed her later on and made sure I returned the favor - just a "you go girl!" or "you're doing great!" to lift the spirits of a fellow runner. She passed me again. And again, she used a bit of that precious, fleeting energy to keep me going.

She wasn't the only one. There was a middle-aged guy, a couple of teenage girls, a group of moms. All of us runners were finding the strength to look past our own journey and speak words of encouragement to those who were struggling beside us. This is the reason I ran that marathon. It wasn’t just some crazy idea or something I wanted to check off my bucket list. Looking back, I know I was supposed to run that race so that I could feel that camaraderie...with total strangers.

And maybe this fertility stuff is kind of like a marathon. We're all running the same race with the same finish line. Some are young. Some are older. Some run with partners. And some run alone. Some run a little more smoothly and others really struggle. For some of us, it's our first race. And some of us know what it's like to cross that finish line. It can be exciting at first, even fun.

But then we hit mile fourteen. Maybe it's the realization that the money we set aside for treatments is running out. Maybe it's the third miscarriage, the eighth negative pregnancy test, the second canceled IVF cycle. And when we hit mile fourteen, we need more than we can offer ourselves. We need that 70-year-old lady. We need each other.

We're running the same race, with the same goal in sight, just an arm's reach from one another, but we're still really lonely.

So maybe someday, I'll do it. I might just speak up, take the risk.

"What are you in for?" I'll say to a woman in skinny jeans, clutching her insurance card. Maybe she'll be offended. Maybe she'll tell me it's none of my business.

Or maybe she'll take a deep breath and talk about it...actually talk about it. Maybe for the first time. Maybe she...maybe we...won't feel so lonely in that fertility clinic waiting room. Maybe I can be her lady with the limp. Maybe she can be mine.

And maybe someday, we won't really care how long it takes for the nurse to call our names.

It started with that dream, with that maybe. And then one day in the waiting room, I gathered up my courage…all of the courage that I’d earned from the infertility treatments and the blood draws and the tough conversations and the financial risks that infertility requires…and I used it to give my maybe a shot.

I decided to talk to someone. I picked a woman who looked really nice and friendly. I sat close enough to her to have a conversation but kept some distance between us to avoid freaking her out.

I took a deep breath and just dove in headfirst. 

"Are you here for blood work or an ultrasound?" I asked.

She didn't speak English.

So I just smiled. A genuine, smile that said both “this sucks, doesn’t it?” and “you’ve got this, girl.”

And she smiled back. A smile that said both “this is so awkward,” and “this is really great…really important.”

That weird, seemingly insignificant interaction changed me. I decided that I was going to begin a personal mission to light up the waiting room. To smile. To gulp down my fear and insecurity and maybe even say something to somebody. To make eye contact with other men and women who are struggling through this journey like I am.

So how many of you want to join the movement? It’s a humble, scary, little movement, but it’s a movement nonetheless. A movement towards making infertility clinic waiting rooms warmer and more friendly. A movement about deciding that advocacy starts by learning how to look one another in the eye and offer a gentle smile, a kind hello, an unspoken commitment to be the lady with the limp.

What is infertility?

About National Infertility Awareness Week

join the movement...tell your story

National Infertility Awareness Week is April 21-27. RESOLVE, the national infertility association, is sponsoring a Bloggers Unite event, centered around the theme - "Join the Movement." So this week, I plan to write several posts inspired by this idea.

Last year at this time, I participated in National Infertility Awareness Week by being interviewed for a local news story about infertility and The Family Act. Here's a link to the video and accompanying article that feature my story.

Less than twelve hours before the news program was set to air, I received a mass email from my former RESOLVE support group leader, asking if anyone was willing to talk to a reporter.  I emailed back immediately. I didn't even think twice. I was a little scared, of course. Would I be able to articulate my thoughts and feelings clearly? How would I be represented after the editing process? How would the story be received by the general public?

But I felt this visceral drive to tell my story, a drive that was much more powerful than fear and insecurity. I knew that by sharing our experience with infertility, late miscarriage and in vitro fertilization, I was also sharing the stories of millions of men and women who have walked, are walking, and will walk the unsteady path of infertility. I knew that I had to do it and I felt honored to be a voice for a group of people who often suffer silently.

I looked up the story a few days after it aired and read the comments. Of course, the comment that stuck out was the mean one. Someone stated that he questions the mental stability of "these people," meaning me and other IVF-ers. He said that wanting a child that badly suggests that we have underlying psychological problems and should see a shrink. He also added that there are lots of kids out there who need to be adopted.

Ouch. I don't even know this man, but his words hurt. I typed and then deleted four different responses to his comment. I'm so glad that I chose not to engage with him. I'm so glad that I chose to keep things positive. I'm so glad that I started a blog instead.

Sharing my story on this blog has changed my life. I have received countless emails, comments and texts from people who have lost a child and/or are having trouble conceiving. Many of them tell me that no one knows their struggle, that this is the first time they've talked about it, that they don't know anyone else who is infertile. I admire their courage in reaching out and starting to tell their story, even if it's just to one person. Even if I'm the only one reading their unborn child's name and sending back a little hope and encouragement. I feel humbled every time I get to share in their journey, even if it's just for a few steps.

So what's your story? It may not seem like much to you, but every story that's shared - whether spoken or written, whether whispered or broadcast around the world - matters. And every story adds an individual voice to our collective song. A song of heart break. A song of dreams unrealized. A song of hope. 

So join the movement. Tell your story.

We're listening.

What is infertility?

About National Infertility Awareness Week

the conservatory

It's late April and we're in the middle of a winter storm warning. I have a twelve-foot pile of snow in front of my house. I had to run my car for twenty minutes this morning in order to be able to chip the ice off. So today, we went to the conservatory...where it was warm. We saw beautiful flowers, mingled with koi fish, and breathed in the sweet and spicy scent of plants whose names we couldn't pronounce.

Here are some pictures from our fun (and warm!) afternoon.

(We also saw a twenty-foot-long anaconda squeezing/drowning a frozen guinea pig. It doesn't really fit the mood of this post, but it was actually really amazing, so I had to share.)

snafu

I have the worst luck with pharmacies. The worst. In the last four years, I have spent way too many hours at that wretched counter, reading through the list of medication flavorings (chocolate banana pie? seriously?) while the pharmacist and the techs try to figure out who I am and where my medication went.

One pharmacy in particular has been especially troublesome. It's one of those big grocery store pharmacies, and while I like the fact that I can grab some Noosa and a few avocados while they fill my prescription, I do not appreciate the fact that they give me the wrong medication in the wrong doses...all the time. I'm not kidding. If I had to take a guess, I'd say that 15 out of 100 visits to this pharmacy have gone off without a hitch.

About a year ago, I stopped by the pharmacy to pick up a prescription for Harriet. She was only three months old, so the medication was obviously supposed to be liquid. But when I loosened the staple on that crisp white bag, I found a bottle of white powder inside. At first, I was a little nervous that I had unknowingly become part of something illegal, but then I remembered which pharmacy I was dealing with, so I gave them a call.

"Oh," the pharmacist said. "Looks like we just forgot to mix it. Take 42.57 milliliters of distilled water..."

I was pretty sure that wasn't my job. Plus, I didn't have distilled water or anything to measure 42.57 milliliters with, so I put Harriet back in her car seat and hoped our second visit that day would result in some medication we could actually use. That time, we were successful. Except that they flavored her medication with peppermint. They could have chosen strawberry or bubblegum or grape but they chose peppermint…for a baby.

I had my baseline ultrasound last week (the first step in cycle #2, just to make sure my body was at a good starting point). We were pushing naptime on the way home from the appointment, so I decided not to brave that awful pharmacy. I called a new pharmacy and asked if how long he thought it would take to fill a femara prescription. Fifteen minutes. Perfect.

Twenty-five minutes and six screaming, lying-on-the-floor temper tantrums later (by Harriet, not me), the very kind pharmacist had my femara ready on the counter. Only one problem - they work with every insurance company but ours. It was going to cost $120, so I apologized like crazy and headed home without the medication. While Harriet was napping, I contacted my fertility clinic to see if they could call the prescription in to a third pharmacy. That way, when Harriet woke up, I could just breeze in and grab it rather than having to hang out at the pharmacy forever.

I thought I'd make it especially convenient for the nurse, so I had the phone number ready. Not good enough. She wanted the fax number.

"Okay, I'll look it up," I said while scouring the website. "I don’t think it’s on here..."

Silence.

"Do you want me to find it and call you back?" I asked, assuming she'd say she could call it in or look up the fax number herself.

"Sure," she said, "Give me a call when you have it."

So I called pharmacy #3 and was promptly told that they don't give their fax number out to regular people, just doctors and nurses. I wanted to be like, "My husband is a nurse. Can you tell him?" But I hung up and called the clinic back.

"Can you please put me through to the nurse line?" I asked the receptionist.

"Nope, the nurse line is closed," she said.

"Well, I was just talking to somebody and she's expecting my call," I answered.

"Who were you talking to?" she quizzed.

"I don't remember her name."

An annoyed little sigh and then, "I'll go figure out who you're looking for."

Eventually, the nurse agreed to call it in and we were ready to go.

A couple hours later, I drove to pharmacy #3, naively expecting that this shiny new pharmacy was the Promised Land where prescriptions are actually filled.

But when the pharmacy technician with the sparkliest, dangliest earring I've ever seen asked if I had ever filled a prescription with them before (I hadn't), I knew I was in trouble. 

She asked for my name, address, date of birth and my insurance card. Then she pecked at her keyboard for more than ten minutes without a word. I was baffled. I hadn't possibly told her enough information to keep her busy for that long! Was she filling out a detailed physical description of me? Was she checking Facebook? Was she writing some fan fiction? 

Another customer and her twenty-something daughter walked up behind me. They stood there for about two minutes before they started sighing loudly and asking no one and everyone what was going on and why this was taking so long. I started to get a little bit nervous because this woman sounded seriously drunk. She kept talking in slurred half sentences about her diabetes medication and I was just hoping like crazy that she really was drunk and not about to head into a diabetic coma or something.

After about ten minutes, the fancy-pants tech had to take her lunch break, so a darling, red-headed tech took over. 

"Name?" she asked. I told her.

"Birthdate?" I told her that too.

"Address?"

I politely shared that the previous worker had already asked all of that stuff. 

"Well, she didn't put it in the computer."

Then what was she doing that whole time?!?!

The drunk/diabetic woman’s patience was running low, and now there was an older man in line behind her, dropping the f-bomb and wondering very loudly what on earth the problem was.

The red-head only typed for about five minutes without a word before telling me that I'm not covered by my insurance plan.

"Yes I am," I assured her.

She called the insurance company. They hung up on her twice. She was on hold for eight more minutes before she was able to talk to someone who insisted that I was an impostor.

She cupped her hand over the receiver, tilted her head slightly and asked, "Were you born in 1958?"

She was totally serious.

Up until that moment, I was sure that the experience couldn’t get any weirder, but now she was asking me if I was fifty-five years old.

“No. I was born in ’85,” I said, trying not to sound too deadpan.

“That’s the problem,” she said.

She filled the guy on the phone in on the little typo and just like that, I had insurance coverage.

Four more minutes of silent typing.

“I’m going to have to call the insurance company back,” she said. “Your doctor wants you to take two pills per day but your insurance company only allows one pill per day.”

The drunk/diabetic lady and her daughter went to look at makeup. Thank Jesus. The swearing man sat down in a huff.

The tech eventually convinced the insurance company that my doctor not only knew how many pills I was going to be taking, but he had actually suggested I take two at a time. (Yes, I really am that infertile that I have to take double the recommended dose.) The insurance company conceded.

“Okay,” the tech said with a triumphant deep breath. “It’ll take about forty-five minutes for us to fill your prescription.”

I went home.