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.

Tuesday, June 26, 2012

"How do you cope?" – A mile in my shoes

I've never filled out one of these memes before, but something about this one just drew me in. Maybe it's how personal the questions are.

Lately when I look around at all the tough situations people are in – abusive relationships, deaths in the family, special needs, financial woes – I think that if we all put our problems into a pile in the middle of the room and got to choose whichever ones we wanted to go home with, we'd all take our own problems back again. No one's problems are "easier" or "less significant" than anyone else's. And no one would judge anyone else if we'd walked a mile in each other's shoes.

Here's what Rebecca of Here Come the Girls posted about her "A Mile in My Shoes" Carnival:

"I often wonder how people cope with the difficulties they are presented with.  Or rather how I would cope in those situations. When I think about the single mums and dads, the people who have lost a parent, the children with an unexpected medical diagnosis or emotional and behavioural problems, I often think I wouldn’t be able to do it, without really thinking about what it is. It’s very hard to put yourself into someone else’s shoes and think what it must really be like. Yet that is what blogging does so brilliantly. You get to look into other people homes and into their hearts. It’s the perfect opportunity to share some stories, hopefully in a positive way. People are amazing. It’s incredible what we can cope with and I want to be able to celebrate that."

Here are my answers to Rebecca's questions:

1. What is it about your life which has made someone ask how do you cope?

I have lost four pregnancies; three early miscarriages and a stillbirth.

2. What is the best thing about the situation?

I think the best thing is the perspective it's given me on life. I really appreciate what I have and I even appreciate what I've been through because I recognize that it's brought me to where I am and made me who I am today.

3. What is the hardest thing?

The hardest thing is people not getting it. They think that losing a pregnancy is not the same as losing a baby. Well, they were all my babies and I loved them and they all died. Don't judge me for being sad about that. They also think I should just "get over it" and "be thankful for what I have." 
Here's what I have to say about that.

4. What gets you through the day?

Hope. Before I had kids all I could do was hope that one day I would. Now my kids ARE my hope for the future. I get up in the morning because of my kids and every night when I go to sleep, I know I will get up again tomorrow because of them.
When you lose hope, you lose all reason to live.

5. What would you change if you could?

I don't think I would change the fact that babies die. I know I wouldn't change the fact that mine did.

I think what I would change is the amount of information and support that women have available to them. And I am working to change that. When a woman loses a child, she doesn't have the time or the presence of mind to research all the things she needs to know. She doesn't think of the fact that if she doesn't hold him now, she will never have the opportunity again and she may always regret it. It doesn't occur to her to take a picture so that when the memory fades, she will always have something to look at to recall what her baby looked like. She doesn't realize that she should name him now because it's her only "official" opportunity. She has no way of knowing that there will be no grave for her to visit if she doesn't speak up now and interfere with the hospital's SOP. And when she gets home, she feels utterly alone because she doesn't know who to talk to or anyone who can possibly understand what it feels like or where to even begin the healing process.

6. What piece of advice would you give to someone finding themselves in your situation?

Let go of the "why." You will never be able to accept the situation and move on if you keep asking why this happened to you, why this happened to your baby.

I have come to the conclusion that there is a reason, and it must be a good reason, that things happen the way they do. Whatever that reason is, it is bigger than me and bigger than anything I can comprehend. I choose to let go and just accept the fact that that I may never understand. Knowing that there is a reason is enough for me I don't have to know what that reason is.

(The "A Mile In My Shoes" Carnival will be published on July 23rd and there will be a link to it here so you can find all the other entries.)