Actually, long before my most recent personal event, I’ve spent many evenings awake at night pondering the topic of Secondary Infertility. (which I will refer to in this post as SI, for short).
First of all, before I get into the meat of what I want to say… I do not want to alienate or offend my readers who are dealing with primary infertility. We all have individual battles, and each of us is just as important as the next.
That being said, I am completely dumbfounded at the lack of real, detailed, specific data and support for those of us suffering from secondary infertility. At the beginning of this year, I started researching this topic, as well, recurrent miscarriage as part of secondary infertility.
Yes, I found lots of infertility sites. Lots of resources for the “primary infertile”…. articles, data, and support. When I searched on those same sites for “secondary infertility” I found usually one article that was purely put there as a footnote describing only the definition of SI, and lip service to where to go for resources or support.
The truth is, these predicaments are really very different in some ways. Sure, there are many emotions shared in general, but there seems to be slightly different emotions when you call out secondary infertility. Not to say one is more important than the other… they are not. But there is a helplessness and grief component that manifests itself much differently when you’ve had a child and can’t conceive or give birth to another. It’s not worse, it’s just different.
Couple the topic “secondary infertility” and “recurrent miscarriage” as part of the equation and you get even less info if at all.
I searched on Amazon. They have thousands and thousands of books, right? If anything is published, it’s there 99% of the time. You would think it would have at least a dozen or more books on the subject.
I found ONE book on Amazon, (which was out of reprint btw).
Last week, I called all the major hospitals and health centers in my area looking for a support group. I live near a major US city, so you would think that there would be all kinds of support groups for secondary infertility, right?
I did not find even one. I called a larger group advertised in my newspaper with the description “Infertility Support” and spoke to one of the leads, who informed me that their discussions/members tend to focus on traditional infertility and adoption. Most of the people in this group “are childless” she noted, or in the process of adoption.
Ok, so I am evidently not welcome there. My bad.
Look, I’m sure there are plenty of support orgs that are accepting of all variations of infertility, but at the end of the day… how uncomfortable would it be to participate in a support group knowing a few of its members may not really want you there? How do you meld into a group of people feeling confident you aren’t being judged?
Even RESOLVE, a nationwide infertility association has just one page regarding secondary infertility. Where I retrieved this quote:
Even though secondary infertility has a higher prevalence rate than primary infertility, couples are far less apt to seek treatment for this condition. When their first child is conceived with ease, many couples are caught completely off guard by the difficulty of having a second child because they hold the belief that past fertility insures future fertility.
Sadly, couples with secondary infertility tend to receive less social support from others than couples who have primary infertility because the infertility is unacknowledged, the pain associated with infertility is invisible as the couple has a child, and there is no concrete loss in the family. In addition, couples experiencing secondary infertility may be recipients of criticism by others who think they should be grateful for one child and that it is foolish to go to extremes to increase family size. Of course, a couple can be extraordinarily thankful for their existing child and still long for more children.
Sigh. True words.
I feel like a puzzle piece that doesn’t fit anywhere.
I am Googled out, and have come to the conclusion that if millions of women are experiencing this in their lives, where are the resources? Where in the world do these women and their partners go to connect? Where are the positive stories for those who experienced SI?
I have to tell you, when I stumble on a blog and meet someone in my shoes, I get so excited that I found someone else that can relate to what I am going through. I bookmark these blogs, and every day I find at least one more. There is a community out there probably itching for info and support.
So I have this idea. An idea to create an on-line community for secondary infertility. A place for connecting, sharing, and information. Because at the very least, I know the despair and the feelings around this more than anyone. There ought to be a place for women to go where they are not an afterthought.
I’m getting together some ideas on content, so if any of my readers (currently experiencing SI or BTDT) want to throw in some suggestions, I would appreciate it. Obviously, I am in the early stages. But I welcome ALL suggestions.
And, if you are a seasoned web developer that wants to help out (gratis of course…) please contact me.
More to come….
12 thoughts on “an A HA! moment, as Oprah would say”
Shelli, I found another SI blog for youhttp://hopingforanotherbaby.blogspot.com/I don’t know why your posts haven’t been coming up in my Google Reader for the last week – I’m going to redo it and hopefully that fixes it Have a nice week!
I have been lurking on IF blogs since March this year, and just stumbled upon your blog. It has really been hard to find any support for SI. Count me in for some type of SI Support Group. I am also in the New England area, btw.
The support groups don’t exist because we feel guilty for our pain, when we already have a child. Shouldn’t we be happy with that?I know I’m not.Keep us posted on your plans. If you put a site together, I’ll be there with bells on.
Thanks for all of your support.Leigh- you know what, you have got a good point there. Lots of us feel “out of the IF loop” when we are dealing with IF but have not ventured into the A.R.T. area.Melissa- even though my blog has taken on a more serious tone, you are ALWAYS welcome here!! I never intended this blog to be heavy on one subject or another, I write about what is important to me at the time… be it Mom Stuff, work, IF, whatever! You were one of my first bloggy friends, and that will never change.Beka- when I firm up some of my intentions, I do plan to get some feeback from my Ovu friends, great idea.
Shelli ~ sometimes I feel like I have no business reading or even commenting on your blog. But I can’t help but feel sucked in anyway, as I am SO hoping that things turn around for you and your family.I think creating an online community would be a wonderful idea. This may sound trite but I firmly believe that out of something bad comes something good.Go for it!
I feel exactly as you do, Shelli. Except that mine is primary fertility. It’s because we haven’t decided to go for IVF yet I feel like I’m not a proper infertile, you know??
Forgot to mention: You may want to post something about this on the IF boards at Ovusoft, even if it’s just a snippet of your blog post and a link here. 🙂
Fabulous idea. I came across the same issue when I was first diagnoised. Keep us posted on your progress…
GREAT idea. Good luck with it. I am anxious to see the results and know many people will be thrilled to participate.–MM
Sounds like it’ll be a great resource, Shelli. Best of luck!
Thank you for stopping by earlier…SIF is a bear. There’s so much guilt wrapped up on top of everything else. Guilt for having a child, regardless of how conceived.If you want to add to your reads, please see my side-bar where I link to my bloglines. I have them sorted by general topics including SIF. While not as good as a real life support group, it’s been the only thing I’ve been able to find in three years that is consistent and truly “gets” it. However, I’ll be the first to admit that many of my Primary Infertility Readers “get” it, too.
As I was reading this entry, the thought came to mind that you should create a community for this purpose. It seems like this is a sign for you to help others that are in your same situation. I wish you the best of luck.Many hugs,Niki