Be A Part of Research History

researchUpdated 4/27/11: The research study’s author comments below…

How many of you once bounced around looking for someone — anyone — with counseling credentials who knew even a smidgen about what you were going through?  Someone who actually heard you when you explained your dogged pursuit of parenthood…and now your need for a bit of guidance as you pivot to a life without children? Let’s see a show of hands.

Not surprised in the least. That’s what led one therapist — after her own experience with infertility and, in particular, her difficulty finding help — to add infertility to her specialty.

Listen to Marni’s story (and learn how you can make a difference and expand the body of knowledge on this topic.) In addition to working full-time, Marni is a doctoral student at the University of Pennsylvania School of Social Policy and Practice:

“I sought out a number of therapists, all of whom were unable to hear that I was not interested in adopting or using third party reproduction. All thought it was a ‘not interested yet,’ and seemed to be on a mission to convince me that ‘a child is a child.’

“Who knows – maybe clinical training vanishes around this subject; perhaps I had bad luck. In the end, I ended up working through much of my grief and sadness alone, with the support of my husband and whatever reading I could do on the subject.

“I have always admired how “out there” you have been with your struggle, which is incredibly brave and courageous. My dissertation topic is Living Without Children After Infertility. The dissertation topic will attempt to discover how women who sought treatment for infertility, were unsuccessful, and for whom adopting or 3rd party reproduction was not an option (for whatever reason) rebuild their lives after ending treatment. There are shorter term studies about this, most of which include women who have adopted, but nothing longer-term. I am curious to discover how women not only fare over the longer-term, but most importantly, how they get there – what is their process? What helped, what didn’t? Are there any patterns for women who are doing better? Anything that stands out for women who aren’t doing well?

Marni just received IRB approval, and is at the recruitment stage. She needs to interview 10 women who fit the criteria. If you have any interest in helping, you’ve landed at the right blog post. You’ll find more detail below:

READ  Fertility Industry Conning Patients?

You may qualify for a research study examining the long-term process of pursuing parenthood with medical assistance to living without children if you:

• Experienced infertility
• Completed treatment at least 3 years ago (“treatment”, for purposes of this study, is defined as any type of medical intervention to enhance fertility, e.g. using Clomiphene or other ovulatory stimulant, IUI, IVF, etc.)
• Are living without children
• Are between the ages of 35-60 (all women, of any sexual orientation, race, ethnicity, or marital status, are invited to participate).

Participation involves one 1-2 hour interview to be done at your convenience. Participants will receive a $10 gift card to Starbucks and travel expenses. Principal Investigator: Ram Cnaan, Ph.D.

For more information, please email Marni: infertilitystudy1(@)gmail(dot) com. All inquiries are strictly confidential. The study even has a Facebook page: Infertility Study.

I cautioned Marni that getting women to open up on this topic is difficult. That’s when she assured me:

“I completely understand any hesitation to go on record. Since this is a dissertation topic that required Institutional Review Board approval from UPenn, I am held to the highest standard of confidentiality. Please know that all interviews are strictly confidential; no personal information will be known by anyone but me.

If you personally don’t qualify, you may know someone who does. Would you care to join me in making history?

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12 thoughts on “Be A Part of Research History

  1. Me

    I’m going to try to forward this info on to the woman I met at my husband’s grandpa’s after-funeral-gathering a few years ago. I’m not totally sure she’s under 60 though…

  2. Tracy

    I am so thankful for what you are doing to help those of us who are choosing to live without children after infertility. It has been a long and rough journey for my husband and I. Though my friends and family were very supportive, no one fully understood our struggles and reasoning for our decisions. I wish I can be more helpful in your research project but I do not qualify as I am only 34 and only stopped all treatments 1 year ago. If I can be of any help, please let me know. Best of luck and and a very huge THANK YOU!

  3. fiona gellatly

    I would like to help u with your study however i live in uk. I wish u all the best i finished treatment 4 years ago am childless and didn’t want to adopt for lots of reasons. I grieve every day so many triggers however i can see a happier road now with my husband and i as a family of 2 altho still have many difficult roads emotionally to navigate so to speak

  4. Debbie

    I would also love to participate, but I am less than a year from my most recent and final attempt. I’ll be interested to hear when the dissertation is completed — maybe Marni would be willing to summarize her results for us on your blog?

  5. Lily - The Infertile Mind

    Count me in if I qualify. Thank you spreading the word on this incredible opportunity.

  6. Kathy

    Count me in if I qualify. I have experienced the same path. I sought out 2 therapists who were of no help at all. I have been on my own path of healing for the past 15 months.

  7. Nikkalynn

    Hey there. Would love to talk for the study, however we just completed our last IVF less than a year ago. :( I have actually always been quite open about it. I continue to be. I figure since I’m in a good place I can be the mouthpiece and face for infertility in place of the women who are unable to do that at the moment, until it becomes less taboo.

    The hubs and I are actually moving on quite well believe it or not. Feel quite resolved in our decision to forgo adoption or donor egg. HUMOR has helped and continues to help immensely. (I think often of creating a stand-up comedy routine around the topic of infertility. Face it, there are a lot of odd/awkward/improbable/heartbreaking and yes, FUNNY situations one finds oneself in via the whole infertility experience… at least we did) And of course humor is so healing…

    Its interesting, we find ourselves now in an unusual position: So, its socially unacceptable to not have kids, we all recognize that. We did everything in our power and nothing “took”. So our options are to live daily in heartbreak, or to heal. We’ve chosen to heal, to redefine and design our lives based on what we have, rather than what’s missing. Well, if I thought not having kids was socially unacceptable, try not having kids and BEING HAPPY in spite of it! We’re finding we’re REALLY in the socially unacceptable minority now.

    We were just with extended family, relaying how we’re coming to resolve, and we’re ‘good’, enjoying our lives; and wow, what resistance did we get: “Parenting is so fun, it completes you, you get to relive your childhood”, AS IF we hadn’t considered all that when we got on the fertility hamster wheel to begin with. My husband to his credit finally cut off his sister: “We did EVERYTHING we could do. Nothing worked. We’re DONE.” We’re comfortable having stopped the pursuit of children. But the world? Not so comfortable with us being comfortable that’s for sure

    Glad someone is doing a study on this. I do hope that not all of your research subjects are sad and despondent. You need to get input from some upbeat folks too. I mean hey- if my destiny is to never be woken up at 5:30 am on a Sunday morning by a wailing toddler, then ubetchya I’m going to recognize what’s good about that and enjoy sleeping in to the utmost.

    Here’s to embracing the journey.
    Hugs to all.

  8. Liz

    Hi Pam and everyone,

    I’ve been reading the blog for a while but it’s my first time posting. Thank you all so much for the supportive environment! Reading this blog (and your book, Pam) has really helped me get through all the craziness. My husband and I did IVF and then decided to just enjoy living as the two of us and the cat.

    I had to write and ask–can we ask Marni why you have to be 35 to qualify for the study? I understand the “3 years post-treatment” bit, since she wants people who have reflected a bit on the process and “come to terms” a little. But why an age limit? I’m 31 now, already nearly two years past ending treatments. Even when I reach three years past treatment I’d still be too young for her study.
    In fact, most people who meet me just assume I “haven’t started trying” yet…not that I’ve tried, failed, gone through treatments and stopped them!

    I’d be very interested to hear from Marni more about the study, if she’s willing. I’d also encourage her, if there’s still time to change the parameters (and I know this may be impossible) to broaden her criteria and allow for more voices. Women can be infertile in their 20’s, and young 30’s, as well as it affecting them throughout the rest of their life. It’s a hell of thing no matter what age you are.

    Nikkalynn–Cheers. I want to see that stand-up comedy routine someday.

  9. lucy

    I would love to be a part of your study and hope that I qualify. If one blessing from infertility has provided for me, it’s the challenge and opportunity to live life that is authentic and creative.

    This site is a blessing for me and reminding me I am not alone in my silent journey and, part of a sorority who embraces new life. Thank You.

  10. Yes, yes, yes, to everything you just said! I love the part about choosing to live in heartbreak all the time or allowing yourself to heal, and DEFINITELY the part about being unacceptable to enjoy the life you ended up with. We still have our crappy days, but we are really starting to enjoy the perks of our childfree existence. Everyone we know either doesn’t want to hear about any of it and like to pretend nothing has changed, or expects us to be sad all the time and looks at us with pity.

  11. Marni

    Hi everyone. Thank you all so much for your support around this study. I’ve received many inquiries, and have spoken, either on the phone or through email, to so many wonderful, kind, interesting women. It has been an honor and a privilege hearing all of your stories. And thank you again, Pamela, for your book, blog, and creating this remarkable community. You rock.

    For those of you who expressed interest in participating, but do not yet qualify (Tracy, Debbie, Nikkalynn, Liz), please email me at infertilitystudy1@gmail.com if you would like me to keep your contact info for future research. (You too, Fiona!) I’d also be happy – thrilled, actually – to share the results of this study. If you are interested, please send me an email if you haven’t already.

    Liz: That is a great question; deciding on the age range was not easy. I chose the lower age range because I felt it was important to give those younger than 35 room to change their minds. This may seem similar to my own complaint of being told, over and over, “you don’t want to adopt or use a donor YET”. Hearing this when you are grieving, stating that you are not interested in non-biological and/or adopted children, and hoping for some guidance about the future is one thing. It is quite another to move through a process over years, and arrive at a different place on one’s own or through circumstances. This was more of a judgment call based on my own observations as well as colleagues’. Certainly there are women over 35 that will change their minds, and those under 35, like you, that are quite settled with their decision. It is an imperfect “system”, for sure. I wish there was a better way.

    Once again, thanks, everyone, for all of your encouragement, support, and input. It is quite meaningful.

  12. […] the University of Pennsylvania. You might remember the call for participants came in a post here a year […]

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