Wednesday, August 26, 2009

What Do You Say?

By Rose Carlson

One of the things I hear most often that is upsetting to bereaved parents is the many insensitive and sometimes downright mean remarks that nearly everyone hears at one time or another. Their disbelief at the things people actually have the nerve to say is generally followed by feelings of wishing they could come up with the perfect reply or the perfect way to handle these thoughtless comments and the people who make them.

Because of this, friendships and other close relationships are often never the same. I always find it very sad that on top of losing a baby, anyone has to lose a friend, too, especially when it’s due to someone saying the wrong thing, or even worse, saying nothing at all. Many times, the people who are closest to you, who you expect to understand your grief and pain the most, are the ones who end up being the most hurtful.

After each of my miscarriages, I was truly shocked and amazed by the words that came from my friend’s and loved one’s mouths…things like: “You’re young, you’ll have more babies!” “At least it happened early.” “There was probably something wrong with ‘it,’ you should think of it as a blessing.” (Oh, really? A miscarriage is a blessing? How exactly, I wanted to ask.). My favorite, “It’s been a MONTH already! You need to get over this!”

I always assumed that the reason people said such things to me and others who have early losses was precisely because they happened early, before anyone except the mother feels much of a connection to the baby. However, after starting my job at Share, I quickly discovered that pretty much anyone who has had a baby die at any time during pregnancy or shortly after birth is likely to hear the same things, and many times, even worse things.

I am routinely stunned and horrified by what parents who have had later losses tell me…like the mom who was told after her daughter was born still at 20 weeks, “At least you hadn’t done a nursery yet.” Or the mom who shared with me that her grandmother told her after the full term stillbirth of her third child, “Oh well…you didn’t need another baby anyway.” Or the many parents who are told “Count your blessings! You have other children!” as if that makes the death of one okay. Or, “It wasn’t meant to be.” The “ors” could go on and on.

Even though it’s been many years since my own losses and I no longer harbor any ill will to those who said such insensitive things to me, I frequently find myself shaking my head in disbelief and outright anger at the things people say. I like to think that we as a society have come a long way over the years in the way we respond to parent’s grief, but sadly, that is not always the case, even though the medical community has become more aware of the needs of the bereaved parents they care for.

However, the support of the medical community ends when the parents leave the hospital without their baby and are plunged back into real life. Family and friends are typically supportive in the early days and weeks, but then many times, something happens. It’s as if their patience wears thin. That is when the “you need to move on” types of comments begin. I hear and read it again and again.

Once the questions about when you are going to get over this start, something else often happens. While the grieving parent’s world has come to a screeching halt, everyone else’s life eventually moves forward. It can be difficult if it seems as if those who were so supportive at the beginning no longer want to hear about your sadness, so you may stop talking about it, which can make everyone around you think you are moving on, when nothing is further from the truth. It’s a vicious circle…one which many times leads to misunderstandings, hurt feelings and sometimes permanent damage to once-close relationships. At this point, it is easy to become angry with your friends and family members who don’t respond or support you the way you wish they would or the way you need them to.

So what is a grieving parent to do? When you are in the depths of grief and feeling vulnerable, it can be difficult to come up with the right thing to say in response to someone who has just said something upsetting to you. I always thought of the most perfect comeback response later.

With many years behind me since my miscarriages, and seven years spent at Share talking to bereaved parents, I’ve heard many ideas on ways of handling those who just don’t get it. I have also discovered that most people want to get it, they want to understand, they want to help, but they simply don’t know what to say or do. And what NOT to say or do. And sadly, most feel as if they are being helpful when they say the things they say.

The best way to deal with people in that situation is to be honest. Tell them that what they just said was hurtful and why. Tell those who seem to ignore you in your time of need what you need from them. I think you will find that for the most part, people are genuinely concerned and sorry when they realize they have been hurtful to you. Of course, there will always be those who no matter what you say still think you are not grieving the “right” way, and there is nothing you will be able to say or do to change their minds. In that case, give yourself permission to limit the time you spend with them as much as possible, at least until you are feeling stronger.

Something that others have found helpful is to write an open letter to family members and friends. When I first started volunteering at Share, I was reading a newsletter one day, and there was a letter in it that a bereaved dad had written. I don’t remember the entire letter, but he basically wrote what he and his wife were going through, and exactly what they needed (and didn’t need) from each of their loved ones. He did so in a loving way without accusing anyone of doing anything wrong. He closed the letter by saying that he hoped they understood. He also told them to keep in mind that whoever was receiving his letter was deeply cared about by him and his wife…that he was sending the letter because they didn’t want to lose any one of their loved ones from their lives due to any misunderstandings that might arise during this very tragic time. I remember reading that letter and thinking how I wished I had thought of something like that, and I often suggest the idea to parents and grandparents.

Try to keep in mind that most of the time, friends and family say the things they do because they want you to be “back to normal” when it is unlikely that you will be. Unless they have been through what you have, they have no way of knowing that. Even though it may be impossible to believe in the early days, you will feel better, you will laugh and be happy and smile again, but you are living a new normal now, and that can be hard, if not impossible, for others who are close to you to accept.

While it seems unfair that in the midst of your grief you have to worry about ‘teaching’ others the best ways to be supportive of you, that is often the way it works out if you want to keep those people in your life. When you are grieving and not feeling as if you are receiving the care and support you need, it’s easy to be angry at your friends and family members who seem to have moved on and don’t respond the way you wish they would.

But at the same time, unless they have been through a similar situation, they will not necessarily know the right way to be helpful to you, and you can guide them…let them know what you need. Just as this is a new and scary journey for you trying to navigate through the confusing maze of grief with it’s many twists and turns and uncertainties, so it can be just as confusing for your loved ones in learning how to be supportive to you as you walk this journey. By being honest with them, it can lead to an even deeper relationship than you had before.

Finally, while it is not easy to do, try to remember that most people who love and care about you want more than anything to be helpful, to ease your pain. But, it’s impossible to do because really, there is nothing that can ease your pain. I work at Share, and even I sometimes have a difficult time coming up with the right thing to say. A couple of years ago, my sister had a little boy who was born still, and I was utterly terrified of saying or doing the wrong thing. Since then, I always think that if someone like me, who spends every day working with and supporting grieving families, questions whether or not I am saying the right things…imagine how challenging it must be for those who haven’t walked this path.

I’m not saying that if someone has said something hurtful that you should just say, “oh well…she meant well.” Not at all. What I am saying is that giving someone the benefit of the doubt, opening the lines of communication, and telling those who have been hurtful or insensitive that they have been can be an important step in ensuring that the death of your baby doesn’t mean the end of a friendship or other relationship that is important to you.

What are some ways you have handled insensitive and hurtful things that others have done or said in the time since your baby died? How did the person respond to you? Did the things you said change anything?


Gina said...

I wrote a letter to my friend who did several hurtful things. I didn't write it immediately and shared it with my therapist and some others. It stated the facts and how it made me feel. It really helped me to feel better, but it did nothing to salvage the relationship. Her response turned many things back around that I did "wrong" I decided that it was not someone that I needed in my life. I also realize that there were so many people who did so many wonderful things and this was just one person. The letter really helped me though.

Elsabe said...

We live in a society where death is not to be discussed unless there is no other alternative. The result is that when death occurs, most people want to continue ignoring it. As a result the bereaved person has to deal with not only the bereavement, but also the ignorance of the community. You are very brave to deal with this.


babyhopes2010 said...

This is a great article. I try to remind myself that people mean well and just don't know what to say unless they've personally been through a miscarriage.

Mama Fierce said...

I once told a friend who was struggling with what to say to me that there was nothing she could say that would make me feel better. I honestly meant this - her words would not take away my pain. This made her feel relieved - she let go of the pressure to say the "perfect" thing and she spoke more from her heart. This may not work with every relationship, but it was a last ditch effort that worked for me.

I can really relate to your struggle with what to say to others yourself. Even going through six miscarriages, every time someone shares their story of loss with me, I think "What do I say?" That gives me a lot of empathy when I'm struggling to understand why people don't know what to say to me.

Anonymous said...

Gina, I'm sorry that your letter didn't get the response you were hoping for and that you lost a friendship anyway. I really wish that more people got it...that they could put themselves in your shoes, even if they haven't had a loss. Especially if they have children. Really, is it so hard to think " would I have felt if that happened to ME?"

Mama Fierce, like you said, there truly is nothing that can be said that will magically take your pain away. I try to keep that in mind when I am talking to parents and wonder if I did them anything for them. I try to tell myself that there are no magic words, and that listening is the best thing you can do most of the time. If only everyone else knew that too.

Salma said...

This is great article. I think culture and other beliefs really play a part in this as well.
It's a struggle and I avoid a lot of people...many.

I feel more bad for them because I know they want to avoid me...or they are just preachy about moving on and whatever. That's annoying.

AmberLynn said...

I've had everything said to me from,"At least you didn't lose him after you got to know him," to "there was probably something wrong with him." I've had people ask me intimate details about the birth and then say,"Well, since he died at 15 weeks, it was probably easier than a full term baby." Really? Its easier giving birth to a baby you'll never hold??? A baby you had really wanted, but now can't have???

But I think the worst is the people that don't talk to me anymore- like there's something I did wrong. Like I'm broken and so they put me in a corner until I'm more fun to play with- until I get pregnant again and we can all "forget" this period in my life. I know that most of them are afraid they'll say the wrong thing, but I already lost my baby- now I feel like I've lost a lot of friends. It would have been really nice if they would have just said,"I'm here for you" and then meant it- check up on me, see how I'm doing. Most of them have lost loved ones- we're they better a month after? 2 months?

Anonymous said...

AmberLynn, I'm so sorry you are having to deal with such insensitive comments. I HATED the "there must have been something wrong with the baby" comments. Like that was supposed to make it all better, or like I should be relieved or something.

I'm sorry your friends aren't talking to you anymore. Have you tried talking to them about it? I know that is so hard to do, but maybe they are waiting for you to say something since they are afraid of saying the wrong thing. Maybe they just need "permission" from you to talk about your son. Unfortunately, many people think that they will make you more sad if they bring the baby up. What they don't realize is that by avoiding you, and avoiding talking about your son, they are making it even harder for you.

How long has it been since your son died?

Rachelle said...

I've written a book on coping with miscarriage and include a chapter on this very subject. It is so difficult to hear these comments when you're hurting. I often wanted to give a comeback, but in retrospect I'm glad I was too mortified to do so. I've come to understand that empathy is a powerful thing, something that can't really be taught and because of this people have a hard time knowing how to cope with and offer support to others when they just can't understand why this unthinkable loss has happened. It doesn't make what they say any better, but on a different level I realize that a part of them is hurting for my loss and doesn't know how to communicate it.

Anonymous said...

Rachelle, what is the name of your book? I would love to read it!

Rachelle said...

Thank you. My book is Lost Children: Coping with Miscarriage, and it will be published May 2010, so not yet, but coming soon! :)

Elizabeth said...

Dear phenomenal women:
It has been very hard for me to cope with my seven weeks old baby' loss . We have had the support from my parents, our church community and my workmates. Still, I have heard the most incredible comments from people. As I live in Chile where culturally speaking we do not express our negative feelings as Americans do, ( we are not a very assertive culture) we have learnt to be tolerant to other people`s reactions and responses. Yes, I know it sounds incredible but I have been the one learning to be tolerant, to listen to others and being emphatic because I guess our friends and family just want to reasure us and say something that can make us feel better. Some of my friends have told me they did not call me because they did not know what to say. And I reply "It is ok if you do not know what to do or what to say because I know you are really concern about me"
Sharing in a christian community makes things sensitive as well. Imagine comments like "It is the best thing that could happen" "God is in controlling everything in our lives" "you will soon understand this was for better" " it is is beter to die as a young baby than being born sick" "I think it would be worse to have a baby die in your arms " "It is a miracle, imagine having a sick baby instead of a miscarriage" "God will give you more children" "God knows what he does"
From the point of view of a Christina it is also hard to understand and accepts things. It is painful to understand why God allows you to suffer so much physically, intelectually, emotionally and spiritually.
I have read this information in English because we need more materials in Spanish. I have realized that it could be a good iadea to write articles for women in my country, in my culture and using my own first language.
We also think that in the future we will be able to support other familis who may loose their children and being emphatic. We are active in our church and now we know exactly what to say to people instead of saying "God knows why He allows this to happen"

LiliRoseLili said...

Dear Rose,
I've just come across your post. I know it's from six years ago but what you say is still so relevant. I wish I had read it last year following my first miscarriage. I've just lost a second baby and my reaction has been different this time. Last time I pushed myself too hard to get over it quickly and as a result it took me a very long time to feel ok again. This time, I am calmer and slower with my grief, more cautious with what I can achieve on a day to day basis. I'm looking after myself and not expecting too much of myself, too soon. That's not to say I am any less sad, any less frightened by the experience and by what's to come in the future; I'm just trying to be kinder to myself this time.
In the same way that I have learned from the first time, I feel my family and friends have too. You're right in saying that on the whole people just want to help, they are desperate to say the right thing but they panic sometimes and put their foot in it. Some people, however, don't even try to understand, and they are the ones who do the most damage. I was particularly hurt last year by something I heard secondhand was said about me, about how long I was taking to "get over it". How dare they say that, it's nothing to do with them, this is my grief, mine and my husband's, and we will take as long as we need! But when I think about it now, I don't feel so angry. I've forgiven them, they never even knew I found out. I'm happy I didn't confront them, what would have been the point, it would have been messy and upsetting and I couldn't handle that on top of everything else. I'm happy that we are still friends, it was their weakness that made them say it and everybody makes mistakes.
You are spot on when you talk of the "new normal" - that's exactly it. We adjust to a new normal when on the face of it we are exactly the same to our family and friends, work colleagues and vague acquaintances. I think that's what sometimes hurts the most, the generic "how are you's" from people you barely know.
Anyway, I wanted to thank you for your post, I really enjoyed reading it.
I've blogged about my first miscarriage if you are interested to read it. I found writing enormously helpful to the healing process last time, perhaps I will do the same again this time.

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