Playing God - Part 1

A few weeks ago, before an embryo transfer, my embryologist recited a Bible verse to me that she had given to my patient. The patient, had written down this verse on a scrap of paper and was taking it into the room to get her embryo transfer.

When Shan recited this verse and told me that the patient was carrying it, I felt a lump in my throat, a lump that is usually associated with great sorrow, or overwhelming joy and relief.

"That's strange," I thought and wondered why it made me feel so unexpectedly emotional.

It was like an aroma that transports you back in time, to a specific place, by-passing the normal circuits of memory. I was at once filled with specific and vague memories and feelings of joy, despair, love, shame and remorse. It was a tidal wave of regret and gratitude.

It reminded me of how small we are compared to the forces at work in the universe.

Despite my religious upbringing, I honestly could not recall ever seeing that verse. More likely, I hadn't been prepared to see it before.

It's humbling to realize that this was there all along, and it sums up something that took me years to understand.

So what was the verse?

1st Corinthians 2:9, "No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him."

With that, let me get to the actual blog entry.

What I am about to write is not something just for people with a religious inclination. I think even an atheist will fall prey to some of the thinking that I talk about in this entry. If nothing else, perhaps it will help somebody else understand how another person feels (and fears). So hopefully, this entry will be of benefit to everybody.

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When I was an Ob/Gyn resident, I told a nurse that I wanted to be a Reproductive Endocrinologist. As she looked back at me, a look of disgust spread across her face. “Why would you want to do THAT?” she asked. “It’s so immoral. It’s playing God.”

She proceeded to lecture me along these lines for several minutes before finally concluding that if people weren’t meant to have kids, then they should not have them and they had no right to be parents.

I asked her if she thought that my wife and I should not be allowed to have children.

“I didn’t say that,” she said.

“Yes, you did,” I told her.

This exchange allowed us to have what is sometimes called a teachable moment. Probably for the first time in her life, she saw what she said in context of an actual human being rather than a person on paper or in her imagination.

I told her that I didn’t know what God intended for my life. Despite using all the technology available to us, my wife and I had not conceived. Was this punishment for trying to play God? I had no way of knowing. But I did know this, no matter what I did, if God did not want me to have children this way, then my wife and I would be childless.

I think her mind changed that night. What changed it was not an argument, but a realization.

As my wife and I struggled with infertility, we wished there were clear signs telling us what we were supposed to do. Were we supposed to just stop? Or were we supposed to take advantage of all the treatment that God put before us? Was IVF a path to the garden? Or was it the forbidden fruit?

With each failure, in the midst of each great sorrow, we asked the same questions again… what were we supposed to do? Were we being sinful, or prideful wanting to have children that were biologically related to us? Were we following God’s commandment? Or were we pushing our wishes ahead of God’s will?

In the absence of signs, we persevered. We knew only one thing for sure: if we did not try, we would not conceive we would regret our decision later.

I personally have not met any patients who I thought were trying to play God. I’ve met people suffering from infertility, people like me and my wife, struggling to understand the plan, if any, for our lives.

The Unspeakable Truth

It was something we didn’t talk about.

Because we were both secretly ashamed of it, my wife and I didn’t admit it to each other. We barely wanted to admit it to ourselves. We certainly didn’t discuss it with even our best friends – some of whom may be reading this now.

And before I go on, let me say that I believe what I am about to tell you says much more about me and my wife than it does about our friends. At the same time, what I am about to describe is a nearly universal experience for couples with long-standing infertility.

So here goes.

When we were struggling to get pregnant and if you got pregnant… we hated you.

It’s true. (Though my wife denies this, officially.)

We hated you because you were so happy. We hated you because you didn’t want to tell us you were pregnant, because you didn’t want to hurt our feelings. We hated you because we felt abandoned. It was one more reminder that we were relatively alone in this predicament.

It was even hard to feel happy for other infertile couples who finally conceived. When they got pregnant we felt even greater abandonment.

Now there were times when I tried to soften this word, tried to work around it and redefine it. I’d call it anger at our situation. I’d call it envy, jealousy, resentment, spite…

But in the end, all those words and all those emotions still felt the same… they felt like hate or some other withering emotion.

And like hate, this emotion took much more of a toll on me and my wife than it did our friends.

In fact, I’m not sure anyone ever knew how we felt. My wife hosted baby showers for friends, visited new mothers in the hospital, held new babies and marveled at them.

So no, we weren’t totally consumed by these negative emotions, but they were always there… like a slacker college roommate who never left the couch. While our friends were largely unaware, we had to live with the negative emotion. We had to secretly wonder what it said about us. In some ways it was further confirmation that we were just bad people.


In talking to patients, I’ve come to realize how common these feelings are. With rare exception, patients have confessed that they feel this way, too. Nearly always, the patients are racked by guilt over these feelings. They think they are being petty and spiteful. They think they are terrible people because of it.

I tried to talk my way around these feelings, to shun them, to shut them out. But I have to confess, it was only after I could openly admit my feelings that I could begin to work through them.

These feelings were nothing, if not humbling. They were a reminder of my imperfection. But knowing how common these feelings are, knowing how imperfect so many of us are has also given me comfort.

Perhaps that’s why I’m so willing to share my experience with my patients. I can see the visible relief on their faces when I confess this story.

I give them permission to be angry. I am hoping they have the same experience I did: by embracing the pain, it starts to ease.



Afterthought:
Jim Benton, author of the very funny “Happy Bunny” series writes: “Hate is a special kind of love we give to people who suck.”

Hope

If you are like me and my wife, most of the time you’ve got things pretty well covered. The world seems to run better when you’re in charge, and for the most part, things go your way.

I think that’s partly why the diagnosis of infertility was so frustrating to us. It seemed like everything about it was out of our control. To make matters worse, a lot of current medical advice encouraged patients to educate themselves about their condition. While this is a good concept, it has a major pitfall: mainly, it gives you the sense that you do have more control over the situation than you actually do.

The more we tried to gain control of it, the more elusive getting pregnant became. The more frustrated we became.

This frustration and desire for control had many implications. I saw this as a patient and I continue to see this as a doctor.

The first casualty in this quest for control was our self esteem.

Getting pregnant was so easy for other people. We could not go to the mall or the grocery store without feeling like we had stumbled into a stroller stampede. Happy mothers and families were everywhere.

If it was so easy for them, then something was wrong with us. We had a sense that we were somehow not worthy, or that we were being punished.

To make matters worse, during much of our journey, I was an Ob/Gyn resident. Daily, I cared for couples who seemed to take their fertility for granted. I saw women (drug addicts, alcoholic) who made very unhealthy choices for their pregnancies. I saw 13 year old girls who thought that pregnancy was a perfectly normal part of adolescence.

It made me wonder what sin I had committed to make me unworthy of being a father.

This blame made us somehow doubt that any treatment would work. Success seemed so far away.

This blame skewed our ability to interpret what the doctors told us. When we were told that an individual treatment would have a 15% chance of working we somehow focused on that 15% only. That 15% received 100% of our attention. So when the most likely thing happened -- we did not conceive -- our disappointment was out of proportion to what our actual chances had been. We thought each failure was an indictment, or a failure of the doctor.

As I sit here and write this, there are so many tangential directions I could go explore. There are so many examples of how we gradually lost trust that we would ever conceive, but I won’t elaborate on them right now.

I can say that I think I know what kept us going.

First, we kept trying because despite each failure, we would have regretted not trying one more time.

Second, I knew I was not yet ready to adopt. At that time in my life, it seemed like "second best". And as long as I felt that way, I knew that would not be fair to a child. (Of course I felt guilty about this, too, and it only reinforced my doubts about whether I was worthy.)

But ultimately, despite all the guilt, despite wondering if we were being punished, I was hopeful.

I was hopeful that our suffering was a gift.

I didn’t know what kind of gift it would be: compassion and understanding for those in my shoes; a greater love for a child (adopted or otherwise) should we ever have one; a cautionary tale for others.

In the end, I learned that no matter how much I tried, I could not control hope. It controlled me.

This was how I came to realize that hope is at once wonderful… and cruel.

Recalling Bad Advice

In my first entry, I talked briefly about the advice that people sometimes give couples who are having difficulty conceiving. I even confessed that there was a time when I thought stress was a major cause of infertility. I also promised to talk a little bit about “recall bias.”

I know.

A term like “recall bias” could make your eyes glaze over.

On the other hand, it may be helpful when arguing politics, sports, or many other topics.

Recall bias victimizes infertility patients on a regular basis. If you are an infertility patient, just knowing about recall bias can make your day better.

So what exactly is recall bias?

Definition:
Simply put: recall bias is the tendency to remember extraordinary events with greater clarity than ordinary events.

Example:
Think of your wedding day. Unless you were six sheets to the wind, it is very likely you remember many details of your wedding day, almost like it was yesterday.

Compare your memories of your wedding day to the 3rd Saturday after you got married. Unless something extraordinary happened on that 3rd Saturday (or you have the memory of a supercomputer), it’s likely that you remember your wedding day and can’t recall a single event that happened on the third Saturday.

Practical Application:
How does this apply to the advice you get from others when you’re trying to conceive?

Well, imagine 10 infertile couples. All 10 couples have been trying to get pregnant for a number of years. After years of tests, fertility pills, injections and more negative pregnancy tests than any of the couples care to remember, they each decide to adopt.

The adoptions go well and all 10 couples get a brand new baby. Two months after the adoption one of the couples, the Williams, learns that they are also pregnant.

The Williams tell their friends and family this incredible story. After years of infertility, they adopted and then got pregnant! They reasonably assume that it’s either a miracle or that they just finally relaxed, or both.

But not only will the Williams give birth to a child, they will also give birth to recall bias. Recall bias emerges because of the way the Williams’ story is told compared to the other 9 couples.

For example, the Williams tell their friends, family, co-workers etc. of their miracle. As this is an extra-ordinary event, the story is more likely to be retold. It is also more likely to be remembered by people who don’t even know the Williams. And they remember the moral of the tale, if you just quit trying – it will happen!

As shown by the graphic to the right, the Williams’ story gets told and retold.

In contrast, who tells and retells the story of all the other couples who did not get pregnant after they adopted?

No one. Nobody retells those stories.

So, which story are you, as an infertile couple more likely to be told?

The Williams.

What’s the implication? If you relax, you’ll get pregnant.

That’s recall bias.


A final thought for today:

If you are reading this and are struggling with infertility, I give you permission to stress as much as you want to. If you need a prescription to show to your friends that I say it is okay to stress, I’ll write one for you. Aside from stress severe enough to prevent a woman from ovulating, there is no good evidence that worrying about infertility makes it harder to conceive.

If, however, your stress is affecting your marriage, your happiness, your work, or your family, I do strongly suggest finding a healthy way to manage it. Seek whatever outlet makes the most sense to you: a friend, clergy, psychologist, acupuncturist, massage therapist or even a personal trainer.

Stress is much more likely to have a negative impact on your work or relationships than it is on your ability to get pregnant.