Wednesday, December 12, 2012

A Taboo Subject

Pregnancy Loss and Infant Loss – What Not to Say

In the olden days, pregnancy loss and infant loss were a common, accepted part of everyday life.

Today, even though every healthy pregnancy has a one in five chance of ending in miscarriage, somehow the subject has become taboo. Doctors don't warn you about how likely it is to happen. Friends and relatives don't mention that they've experienced it personally. No one talks about it. I don't know why; Maybe it's just too sad. Maybe people are afraid if they mention the word, it will happen to them. Whatever the reason, there is a stigma attached to the subjects of miscarriage, pregnancy loss, stillbirth and infant loss. Nobody wants to think about them. Nobody wants to talk about them. And the consequences, unfortunately, are that when a pregnancy or infant is lost, the parents are completely unprepared because they didn't know it could happen to them and they have no one to talk to about it, no way to work through or deal with their loss. They feel utterly alone.

Unfortunately I have a great deal of personal experience with pregnancy loss. I lost my first two pregnancies. I was shocked. I thought this was something that only happened to older people and that it was very very rare. Thankfully I was able to have healthy children after that, but I also had two more losses, including a stillbirth in my fifth month.

I have a policy about talking about my losses. I post about them on Facebook. I talk about them extensively with friends – those who've been there and those who haven't, those I've know forever and those I've just met once or twice. I am anti-stigma and it is my mission to break the taboo, to get women who are suffering in silence to feel comfortable having an open dialogue about something they have no reason to be ashamed of.

I once mentioned on Facebook that I'd had a miscarriage and I received a private message from an acquaintance: "I had a miscarriage 30 years ago and this is the first time I've ever mentioned it to anybody. But I still think about that baby and how my life would have been different if he'd survived." Losing a child – born or yet unborn – affects a mother forever. She will never forget that child, whether she spent nine weeks with it, nine months, or nine years.

When your friend, relative, or someone you know suffers from a miscarriage, a stillbirth, or an infant loss, your instinct is to try to comfort her. You want to say the right thing but sometimes it comes out wrong. Even the most well-meaning message may take on a different meaning when you are dealing with a grieving mother. Even the simplest thing you say could turn out to be hurtful. Because this has happened too many times to me as well as to people I love, I have compiled a list of what not to say. I am also including some things you can do to help your loved one get through this difficult time.

What not to say to someone who has suffered from miscarriage, pregnancy loss, stillbirth or infant loss:

1. It's very common; it happens to a lot of people. (This is undoubtedly true, but it doesn't make me feel better about it happening to me.)
2. It wasn't meant to be. (What are you, God? Who are you to say whether my baby was meant to live or die?)
3. She's in a better place. (How do you know where she is? The only place I want her to be is in my arms.)
4. You weren't very far along. It wasn't even a real baby yet. (It was a baby to me! From the moment I got that positive pregnancy test, I was picking out maternity clothes, thinking about names, considering schools, planning her life as my child and mine as her mother. The loss of a pregnancy at any stage is a significant loss for a mother.)
5. God doesn't give us anything we can't handle. (It sure doesn't feel that way to me.)
6. She must have already fulfilled her mission in this world. (Even if I believed that, I don't believe it was OK for her to die.)
7. You're better off – she would have been brain damaged if she'd survived. (How dare you say I'm better off without my baby? I would have loved her no matter who she was. I am not relieved that she's gone!)
8. At least you know you can get pregnant; you can always try again. (That does not take away the pain of losing this baby.)
9. Did you lift anything heavy or work too hard or have a lot of stress? (Chances are nothing I did cause my miscarriage, and asking this question is only going to make me feel guilty. I feel guilty enough already.)
10. Did you try acupuncture/feng shui/meditation/veganism? Maybe those would have helped. (Maybe they would have and maybe they wouldn't have, but I can't exactly go back in time and try them.)
11. At least you have two healthy kids. (Would you say someone who lost a grandmother "at least you have another one?" Would you say to someone who lost a living child "at least you have two more?" I didn't think so.)
12. You're young, you have plenty of opportunity to have more. (Again, this doesn't negate the fact that I lost a child. Maybe one day I will feel strong enough to try again, but right now I am mourning.)

I realize that people usually say these things because they mean well. But remember, your friend has just suffered a terrible loss. She is extremely sensitive, and even the best intended words can end up sounding hurtful. You have to remember that, no matter how short the pregnancy was or how many children your friend already has, this baby was real to her. This was her child. And her child died. No cliche is going to make that pain go away.

If you ever have to comfort a friend who is suffering after a pregnancy loss or infant loss - and I don't wish this on anyone - the best thing you can do is to say "I'm so sorry for your loss" and give her a hug. You might add "I can't imagine what you're going through." You really don't have to say any more than that. In fact, the less said the better. Take her cues and be there to listen when she needs to talk. The rest of the time, silence is golden.

What you can do, instead of talking, is take over some of the mundane household tasks for her so she can have the time and space she needs to mourn. And don't ask her what you can do to help or tell her to give you a call if she needs anything. Chances are she is too deep in her own grief to know what she needs or to pick up the phone if she does. Choose something you can do and tell her you are doing it. Take her kids to the park or to your house for a playdate. Wash her dishes. Buy her groceries. Drive carpool. If you decide to make dinner, let her know in advance so she doesn't make other plans. In fact, I highly recommend the website, where friends can sign to prepare a meal on a given day and specify what they are making so your friend doesn't end up with lasagna every night for a week. Also, encourage your friend to find a support group, whether online or in person. The women I met in an online miscarriage support group were the only ones I could open up to about this, the only people who could understand exactly what I was going through. They got me through that very difficult time in my life, and all these years later they remain some of my very closest friends.

Instead of trying to come up with something appropriate to say, when there really are very few comforting words to choose from, do something for your friend from the list above, or think of something else you can do for her that you know she would appreciate. These are concrete ways you can help your friend deal with her miscarriage or infant loss without even saying a word.

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