Thursday, February 21, 2008

How we tell

From Mel:
If you have told anyone, how did you broach the conversation? Did you wait for an opening or create it yourself (and if you created it, how)? Do you tell more than one person at a time or do you like to find private moments where you can talk about it one-on-one? Do you prefer to tell people in a written medium--email, letter--or face-to-face? Why did you tell them and how did they react? Were you disappointed or grateful, and did the telling make a difference in your life the day after and the day after that (in other words, did the telling do anything to change your daily existence either positively or negatively)?

Of all of the infertility questions, I think this one is the most difficult for me to answer. I think this may be because it is about other people. I can talk about how I process things with ease, but telling others involves the processing of other people, and it's difficult for me to explain. Maybe because I only get half of the experience.

Basically, telling people about our situation is mostly awkward. I don't know how to bring it up and people generally don't know how to react.

The first thing we had to tell the general public was about my husband's diagnosis. When the diagnosis is a balanced translocation, this is not such an easy thing. Talking about genes and chromosomes and meiosis which are all the things you need to talk about when explaining a balanced translocation. I also had to say that we had had two miscarriages which is what lead to the diagnosis. We were choosy about who we told. We told our family. We told a handful of our closest friends. I just called people up, found a break in the conversation and dove right in. I don't like telling people things like that in writing. I didn't know how else to do it. I just needed to dive in and say my piece. My husband is incredibly introverted, so I knew he couldn't tell people. The only person he told was his mother. I told everybody else.

Reactions varied. It's so long ago now that I don't remember very vividly, but everybody was generally understanding and supportive. My husband's mother was worried she had done something bad during her pregnancy to cause the translocation, so we had to assure her that this wasn't the case. She had a difficult time getting pregnant and finally had by husband after trying for 7 years. We think he inherited the translocation from her, but we never confirmed it with blood tests. We didn't see the point. But everyone understood that we would try IVF with PGD and that hopefully things would work out. Everyone had lots of hope.

I ended up only telling a few people about the third miscarriage. I didn't even tell my brothers and their family at the time. I was tired of sharing so much bad news.

People were curious how the treatments were going, but understood we wanted privacy about exactly where we were in a cycle and how things are going. IVF is weird in that people want to know exactly what's going on when. I didn't ask my friends whether or not they had sex the day before while they were ttc, so I didn't want to tell people the details. I just wanted to let them know if it worked or not.

As it started to become evident that IVF with PGD would not be successful for us, things started to become more difficult and awkward. If asked, I would say that things weren't going well.

When IVF was over and it was time to move on to donor sperm, I felt like I had to tell people again. We want to be pretty open about the donor gametes and we wanted the people close to us to know. Again, how do you bring this up? I called up my brother's families and told them again. I didn't get much of a response from them this time. I think they really didn't know what to say. I was a little disappointed at this. I wanted some sort of confirmation that they knew this transition must be a difficult one for us. At this point it was obvious that our situation was really pretty grim in some ways, though since I had been pregnant three times, there was some hope.

I told a couple of more people. Again, I just brought it up out of nowhere. No one says to me, so... how's your reproductive life? Most people just say something like, 'Oh, Rachel. How horrible," and look awkward and want to change the subject.

After all of the failed donor IUIs, I just sort of gave up hiding it, for the most part. Except at work. I want to hide all of this from work as much as possible.

At this point, telling people at a Resolve support group our story is awkward and inspires sidelong glances and the feeling that the are thinking, "Jeez, that can't happen to me, can it?"

Now that we've had another miscarriage, this time with donor sperm, and we're exploring adoption, we have to do another telling. We have to start telling people we're thinking of adopting. We're not quite there yet, and only a couple of people know we are thinking of moving on. I talk much more openly about all of this with people now. I can talk about the ridiculousness of our situation and how little hope I have that anything will work out. I know that deep down inside my hope still lives, but it's almost impossible for me to deal with talking about hope with other people. I guess I feel like other people don't understand how much hope can hurt. I don't want people to tell me to hope.

I like to be free to talk about our troubles and my miscarriages in front of other people. I like to be able to say, "When I was pregnant," and people to not bat an eye. So telling people has been good that way. I have had some disappointment in some people's reactions. But I think that happens with everything that you tell someone else. True empathy is very difficult. People who haven't dealt with loss on our level can't truly understand. They can know it sucks, but they can't quite get it. I find myself wanting to mostly hang out with or read the adoption blogs or people who have had three or more failed IVFs because I feel like we can relate to one another.

The telling is difficult. That's one of the reasons I have this blog. I feel like I can tell anything to this blog. It is a great listener. Unless I think about the commenting, it never disappoints me. I say what I need to say, I tell what I need to tell and it never disappoints. And this way I know everything I say is captured somewhere.


Mommy Someday said...

Hi there! Just wondering if you read Julia's blog ( I am pretty sure her husband has a balanced translocation, too, but they found a way to compensate for it with a special sperm washing techinique. She has three children with her husband (just gave birth to twins). Perhaps her blog might give you some ideas or suggestions (check in the January 2004 archives for a start).

niobe said...

You're much braver than I am about the whole telling thing. My instinct is to keep it all hidden, to not tell anyone what's happening, what has happened.

Susan said...

I was open in the beginning. But now I only share information if I'm comfortable with the person. After our failed cycles it just gets hard to share.

Kristy said...

you'll be happy to know that there are some of us who know you are going through :) my husband and I finally decided on adoption and have been "waiting" three months... we didn't tell anyone we were adopting until we were through the adoption process...

The Town Criers said...

I love how you showed this side of the story--that telling isn't a single experience but one that needs to happen again and again and again as each new situation crops up.

Anonymous said...

I have a balanced translocation of 1 and 6. I had 3 m/c before they diagnosed it and then had my daugher via IVF/PGD. Unfortunately, my daughter has the translocation as well.

I have had a total of 6 m/c's, 4 natural, 2 after IVf with PGd, and IVF without it.

In fact, I just found out yesterday about the latest, soon to be m/c. I am 41 and we are considering using donor eggs as well even though I have great response to meds, it just is too expensive to keep rolling the dice with translocated and now "old" eggs.

I hope you are finding some hope. A friend of mine has 2 children, and she has a translocation. IT can be done. Good luck!