Endometriosis Blog: Infertility & Miscarriage --- "Letter To A Friend"

Below is a portion of a post by my friend Alicia on her blog. (Alicia has endometriosis and has experienced both infertility and miscarriage). After her post, you'll see my comment back to her below it.

Here is her blog address:

http://yayastuff.blogspot.com/

Since her post and my response are regarding infertility and miscarriage, I decided to include them on my blog. As Alicia as I are friends in addition to fellow bloggers and we belong to the same local endometriosis support group, I am calling this blog post "Letter to a friend".

In order for my comment to Alicia to make any sense, you need to see her blog post first.

See her post and my response below.

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Alicia's blog post:

Thursday, September 11, 2008

Why Am I Hiding?

I was just realizing that I've been stalling in terms of blogging lately. Is it that nothing is on my mind? Or is it that I'm scared to share the true thoughts of what's on my mind? I just looked through my previous blog posts and realized that of the 185 of them, there are 18 of them that I never published. Many of these have to do with infertility and miscarriage, and while it's clarifying in and of itself to write about these, I think I often choose not to publish them because these two topics are often seen as taboo in our society. They are the 'un-talked-about', the 'silent illness', the big elephant in the room, the shadow in the corner, or however you want to look at it. I pride myself on 'not caring what other people think', but then in seeing that I'm worried to post these types of things on MY blog where I can write whatever the heck I feel like, well, I'm just falling into the societal norms. I'm disregarding my true feelings on miscarriage and infertility for fear that it will make my readers uncomfortable. I wish that these two topics were more widely discussed in our culture. On the other side of the world, miscarried babies have their own shrine where people visit and leave toys and presents to the babies. That would never happen here in the western part of the world. Why? Why are we so scared to talk about these topics? Is it like the plague? Do people think that they will 'catch' miscarriage and/or infertility if they are willing to discuss it?
I recently attended another infertility support group meeting and it was amazing. You walk into a room where everyone knows what you are thinking, without saying anything. You walk into a room of acceptance where you can talk about missing your babies you've lost to miscarriage, and the other people in the room don't shudder in non-acceptance. It's an awesome feeling, to feel real, to feel validated, to feel heard. To be seen, truly seen, all of you. Infertility and miscarriage are consuming, dominating, controlling of all aspects of life. Why am I walking through life trying to hide these huge parts of me?

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My comment back to Alicia's blog post:

Endometriosis Blog: Infertility & Miscarriage --- "Letter To A Friend"

Friday, September 12, 2008

Alicia,

You are just so amazing. You are inspiring, brave, refreshingly honest, open, strong, kind, and insightful. When I read posts like this, I get very emotional. You are good at putting tears in my eyes. I mean that in the best possible way.

As you know, I have talked with many women from the local support group about both infertility and miscarriage. Unfortunately, endometriosis causes both of these to be more common.

What's amazing about you is that you are able to face things head on in a way many others can't or fear to. What's amazing about you is that you say what other people may just think in their heads. What's amazing about you is that you recognize the taboos in our society that are just plain wrong and you bring those subjects out into the open. I try to do the same thing with endometriosis.

I try to make people comfortable talking about it, hearing about it, understanding what it is and how it affects women and their familes (and their employers... and their extended families… and society)...

I try my best to speak out about things like infertility and miscarriage too... because I have heard SO MANY stories of pain and suffering and because I feel SO badly for couples who face this terribly challenging, emotional roller coaster ride.

Sometimes I myself am “too careful” precisely because I have heard the intense suffering of so many people.

As you know, I tried not to talk about my daughter to you (or have you hear her in the background on phone calls with you) back when you had just miscarried because I didn't want to be insensitive and remind you of all of the hurt and pain associated with your miscarriage by talking about my healthy daughter.

I now know from talking with you and seeing you return to work as a nanny that you are at peace with it. THAT IS WONDERFUL!

I wish that all couples who have been through miscarriage or infertility could be so at peace with it as you are. Don't get me wrong! By "at peace with it" I don't mean to imply that I am underestimating your very strong desire for a child!! I am NOT doing that!

What I mean is that you have a really extraordinarily healthy attitude about everything that is, frankly, sometimes astounding to me.

I have spoken with many women (and couples) who have been through these painful experiences. I must say that not all of them are anywhere near as open about it as you. Many are not. While the people at the infertility support group meeting you mentioned were "on the same page" with you, I know there are other infertile couples dealing with the pain quietly at home. The people who attend such meetings tend to be the ones who are open in a similar manner to you about these topics.

A friend of mine who has had 2 miscarriages and has battled infertility since then recently talked with me about the idea of attending an infertility support group. While she was open to it, her husband was not. She would have definitely gone if he was open to it but wasn't really comfortable going to a meeting without him.

Everyone is different. I ABSOLUTELY agree with you that our society is wrong about making people feel stigmatized about the topics of miscarriage and infertility!!! I agree with you that it's terribly unfortunate and such stigma DOES HAPPEN.

I know of women who attend our local endometriosis support group and/or who attend the local infertility support group (with or without their partners present) and they have found HUGE relief and support from talking with others. I wish that such groups could help everyone who experiences such a crushing loss... but I am not them and they are not me. Everyone is different. Everyone has their own coping style. Each person has her/her own way of grieving. There is no right or wrong way of doing that.

You know me. I believe that being open, attending support groups, talking about these issues is healthy and prevents “stuffing” emotions and potentially causing psychological self-harm.

HOWEVER, for some people who go through this... support groups and blogging are not the right answer. For some people these issues are intensely private and they have a right to be private about it if that's how they feel.

The trick for people who have not experienced infertility or who have not experienced miscarriage is being able to distinguish between people like you who are very open and want to talk about it and those who fall into the more "private-coping" category!

It is very hard sometimes to know which camp someone falls into. (Other times it’s pretty obvious). Until you said certain things to me (after your miscarriage) that I perceived as "a green light" to talk about children, babies, and my own daughter... I was careful when talking with you! I now know that probably wasn't necessary. (Well, maybe in the beginning after you first had a miscarriage even you might not have appreciated being inundated with baby/child talk, right??)

Other local support group members who have or have had infertility and/or miscarriage have held up very clear "red flags" that have made me careful about what I do or don't say in their presence... or even if I'll take a call from a local support group member who I know is infertile when my daughter is near the phone and easily audible through the phone!

I don't think it's black and white. I think for some people it's black & white in the sense that they are open ("green light") or “not open”/private about it ("red light"). Others seem to float back and forth. Some days their mood and circumstances allow them to feel more open. Others times (such as immediately following some sort of loss), they may feel more inclined to be private.

I ABSOLUTELY agree with you that as a society we should NOT make couples going through these situations feel uncomfortable talking about it! That isolation and/or stigma compounds the grief and loss!

At the same time, I'm not sure that your coping skills would work for every woman who has had a miscarriage. Am I making sense? I ABSOLUTELY hear what you're saying on this amazing and thought-provoking post. I just don't know if everyone has the same coping skills that you do --- to be able to be so open.

At the risk of sounding judgmental (not my intent!), some people who aren't “open” could probably benefit from being more open --- BUT some people really and truly need to deal with their losses privately because that's their style, personality, or way of coping.

So, I AGREE that our society needs to be educated about these issues, needs to be more open, and needs to embrace couples going through this. I also believe that couples going through this need to give clear signals to others as to which camp they are in (red light vs. green light).

If healthy, supportive communication about these topics is to happen, everyone needs to be on the same page about who wants to be open and talk vs. who wants to be private and not talk with just “anyone” about it publicly. It's very tricky.

Some people don't talk publicly about it but DO seek counseling from trained professionals who can provide support and coping skills. Some couples are like you… very open. Some are into support group meetings. Others aren't.

I AGREE with you 100% that we as a society need to provide that support, respect and listening ear for those couples who **DO** want to talk about it. I'm just not sure all couples going through it do, though.

Part of why some don't, I think, is precisely because of our society's warped way of not dealing well with these issues. Our society has become very preoccupied with pregnancy and babies. Think of the countdowns to when Tom Cruise and Katie Holmes’s baby would be born or when Jennifer Lopez would give birth. Our society puts such emphasis on Angelina Jolie and Brad Pitt's family planning or "baby bumps" on celebrities and I think that kind of thing just makes infertile couples or those that have gone through a miscarriage feel even worse! Our society has a strange way of framing parenting, childbirth, infertility, and miscarriage.

Other countries do handle it differently. Western society is behind on this… in my opinion.

I remember when my friend miscarried when she and I were in our 20s… and I mentioned getting a card for her. My mother said, "Oh, Jeanne… that wouldn't be appropriate"... and I thought, "why not?!" If I miscarried, I would perceive a card from a friend as a sign of support and kindness. My mother, on the other hand, thought it would be upsetting to her or "breaking etiquette rules" and that a card would only be appropriate for “other types of death”.

The way I see it death is death. If a woman/couple is excited and happy and thrilled about a pregnancy and then a miscarriage occurs, that is a huge loss! A death has occurred. I'm not talking about the whole controversy over when conception begins or any of that stuff. (I wouldn’t touch that topic on this blog with a 10 foot pole)!

I'm talking right now about the death of the dream that the couple had. There is profound sadness and grief... probably even more so than the grief one would have for someone who had lived a good, long life!

So I think it's a confusing issue for many. I think our society has much room for improvement on these issues. I know when you had a miscarriage that I struggled to give you the best support I knew how.

Part of why I tried so hard to support you is because it's the right thing to do and I believe that all in our society should provide the best comfort they can to couples who go through this. Part of my empathy was because I've heard SO MANY stories of grief and loss from support group members and from my friends/family members. Part of that was I knew how crushing a blow it was to you after years of infertility and I desperately wanted to do ANYTHING I could to help you, support you, assist you in finding helpful resources for coping, etc. I'm honestly not sure most people in society are equipped to provide that kind of support. If it weren't for my being an endometriosis support group leader for 7 years now, I would not have been able to help you in the manner that I did after your miscarriage.

Our society needs to be educated. Wonderful posts like yours go a long way towards that. I am so proud of you!

You are so strong, so compassionate, and just so downright amazing that you do bring tears to my eyes. Keep talking, keep blogging, keep being open, and keep giving clear signals of how your friends and family can best support you and Josh. You are a role model for so many women with your graceful, insightful, open-minded way of handling such adversity.

To miscarry after 5 years of infertility when you have an illness that makes you feel like your clock is ticking louder than most (endometriosis) and be able to be as strong as you are is really remarkable! I have seen many women go through these things but few have coped as well as you have. You have to realize that different people have different levels of coping skills and support. You have many, many friends and that must be very helpful to you. Honestly, not everyone has such a strong network of support as you do.

If you haven't had a chance to check out the widget for the "wear to make aware: infertility's common thread" campaign, see the sidebar of my blog to check it out.

Your positive attitude and strength will continue to carry you through --- just as they have so far... no matter what is in your future. You are one of the strongest people I've ever met! My thoughts and prayers are with you and keep doing what you're doing!!

Jeanne

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.