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Rebels with a Cause: Unbiased Infertility Advocacy-An Oxymoron

By on December 17, 2009

Thankfully, the December 6th Fertile Heart workshop was, as most workshops in the last few years, fully booked, with a list of names on the waiting list. A few days after the workshop I received several moving emails. One of them came from an aspiring dad. Hi Julia, It’s R.D. from last Sunday’s workshop. I just wanted to say how grateful I am that you hold these workshops and that you do the work you do. We both feel like we got so much out of being there and participating on Sunday — we’ve definitely begun to change our holy human loaves for the better! I don’t have much else to say but “thank you” for doing what you do. I understand that it’s a livelihood for you, but it’s also one that helps out a great number of people in need, so I both commend and thank you for it! You offer something that no one else does! We’ll let you know when the baby comes, and then we’ll REALLY be thanking you…R.D. Dads rarely write to me, and this note is particularly poignant, since it touches on a most timely subject. One of the assignments I’ve given myself is to birth the part of me that has the courage to claim the full value of my work, and the value of the service Fertile Heart™ has been providing for close to a decade and a half. And as it happens with the Ovum practice , when you apply the tools to a particular project, you begin to be more receptive to guidance. This time the guidance arrived from the Dad whose note I shared, and from the end- of-year-appeals from two national infertility advocacy groups. Both infertility advocacy groups asked for monetary donations, listed their accomplishments and proclaimed to be the only unbiased source of information for parents with fertility related challenges. Unbiased, was the word that caught my attention. Unbiased infertility advocacy is, of course, an oxymoron. We humans are by nature biased. We are shaped by our experiences; our vote is deeply rooted in our history, our likes and dislikes, and in the case of advocacy groups it is greatly influenced by the hand that signs the largest check. Several years ago an article in one of the Canadian newspapers talked about the ethical issues that arise when advocacy groups are sponsored by pharmaceutical companies and medical institutions. This is something that is begging for attention in the arena of reproductive health. In the case of fertility and advocacy, we have a veritable little mafia operating here in America, with long-standing members of the board of directors of some advocacy groups. making a very, very good living from clinic referrals. Doctors and clinics linked to advocacy groups enjoy the courtesy of reciprocal referrals. Changing the status quo would not serve either group. Where, then, does patient empowerment fit into this scenario? In 1997 after, I completed the manuscript of Inconceivable I sent it to Dr. X, a healthcare provider who was on the board of directors of one of the largest infertility advocacy organizations. I was hoping for an endorsement. She called me a few days later and said how much she loved the book. She sounded genuinely excited: “What a great job you did. You showed quite masterfully how much a person can affect their treatment outcome.” I was delighted. “Thank you,” I said, “I’d love to quote you, if you don’t mind? “ “I’m sorry”, she replied, “your story doesn’t reflect enough the importance of mainstream medicine, and people need mainstream medicine. But I wish you the best of luck with the book.” Dr. X didn’t endorse my book all those years ago, not because she was worried about patients needing mainstream medicine, but because she was worried about her position on the board. She was worried about referrals from doctors drying up if she publicly endorsed a holistically minded book. When the book finally came out, I naively proposed to teach workshops for the same group. But after a few workshops the powers-that-be began to dictate what I could or could not say. A few years later, I received a call from a lovely woman who was on the board of one of the local chapters of another national advocacy association. She told me how much she and her friends loved Inconceivable, and invited me to give a keynote address at their annual conference. They apologetically withdrew the invitation a week later. The other board members were worried that my talk about the link between nutritional deficiencies, and emotional conflicts and fertility would minimize the importance of mainstream treatment. As it happens,ten years later Harvard researchers came out with The Fertility Diet, an embarrassingly poor rendition of a book on food and fertility. (I reviewed in on Amazon) The competition is fierce. As Dr. Debora L. Spar, a former professor at Harvard Business School, notes in her book, The Baby Business: (Harvard Business School Press, 2006) “.. much of the fertility industry is increasingly marked by significant economies of scale, meaning that firms or clinics must serve a large number of clients simply to cover the cost.” Active involvement with a national advocacy group is an effective way to insure a steady stream of income. To be sure there are compassionate, brilliant doctors and healers out there who fret over their patients’ miscarriages and rejoice with each milestone of a long awaited pregnancy. I’m also quite certain that there are many decent, well intentioned women and men who work for advocacy associations. I had the pleasure of meeting caring doctors and caring volunteers. But the source of funding creates an intrinsically corrupt, can’t-bite-the-hand-that-feeds-you climate, and advocacy may ultimately do more to serve the sponsors of such groups than the people they claim to represent. According to Dr. Spar, the high cost of assisted reproduction is the evidence of the supplier’s power to raise prices and the buyer’s willingness to pay. In an op-ed piece on January 25, 2007, commenting on the State of the Union ceremony, the New York Times columnist, Bob Herbert writes: “The candidates for the most part are listening to their handlers and .fat-cat contributors, which is the antithesis of democracy. It’s not easy for ordinary men and women to be heard…but it can be done.” It can only be done if ordinary men and women begin to do their own thinking and then follow through with action. The only thing that will create a change in the growing Infertility Industrial Complex is a more honest public debate. The only thing that will move us the direction of reducing our dependence on technology, thus reducing the demand for the goods of this industry is grassroots, genuinely empowerment–focused education. If you review our history and track record, you will find that every single action we have taken here at Fertile Heart has been aligned with that intention. We are entirely self-funded. Up until now, every penny of the profits from our workshops, educational events, my books and CD’s, and my private counseling has been invested into building the Fertile Heart studio and our online presence. So, you see, R.D., teaching a workshop is a true labor of love and passion for me, not yet a livelihood. Though the opportunity to pass on what I continue learning, has given me riches beyond my wildest imagination. Born into an environment of insufferable injustice and corruption, the grip of state authority so tight, we could barely breathe, I grew up with a sense of utter powerlessness. My fertility challenge has taught me something I haven’t been able to fully grasp through twenty years of new age workshops: I am not powerless, I am in fact as powerful as my dedication to a cause greater than my personal gain. And of course I also derive huge satisfaction and fulfillment from connecting so intimately with people like you. Women and men who choose to engage with me and my work because something in my books or CD’s strikes a chord. Fertile Heart™ now provides support for women and couples all over the world, Australia and Italy, Germany and the Far East. An equally wondrous reward is that I now have the opportunity to finally use the gifts I’ve been blessed with more creatively than I had ever used them before. Sure we could use additional funds. But we pay our taxes, so even if I wanted to, I couldn’t ask you for a tax deductible end-of-year donation. What we need more than money is to know that there are people out there who hear us and see us, and will say thank you not just through effusive thank you notes in their birth announcements but through engaging actively in letting others know that we exist, and helping us birth one fearless and fiercely independent community of aspiring-parent-activists. So that we can not only continue doing what we do but do it better; make it easier for you to find your way; offer you guidance that will hasten the arrival of your child with the least amount of suffering. We hope to add to our resources a referral service driven by those of you who have good things to say about your doctors and acupuncturists, naturopaths, and yoga teachers. (We welcome your input as we begin to build that list). It will not be a referral list you can buy into, because such lists are misleading. I know, I and many of my clients have been misled by them. With more active involvement from you, we hope to add a support circle for new moms, educational events with little known brilliant teachers, doctors, naturopaths, herbalist, holistic pediatricians and reproductive endocrinologists who respect and encourage their patients. I know they’re out there. A few weeks ago, a reader from Germany wrote that she was referred to my books by her Harvard trained endocrinologist. Several doctors have already participated in past Guest Teacher Circles. (We are in the process of creating an archive of transcripts from those events) Many holistic practitioners around the world tell me that their clients came to them because they were inspired by the stories I shared in Inconceivable. They say the book made a significant contribution to popularizing holistic treatment options for reproductive challenges. Now it’s time to raise the bar a little higher. We can do this. I’m hoping you’ll join me on January 4th, when we’ll inaugurate our first Rebels with a Cause Phone Circle of Volunteers. We’ll have fun and I bet our children born and not-yet-born will be rooting for us. I can’t imagine that they wouldn’t want to see us replace a couple of hundred of clinics with biodynamic farmland. Or perhaps with a few acres of wind-turbines. We could still keep a handful of good clinics and doctors in case we really need them, but otherwise let’s invest our dwindling resources in more environmentally friendly endeavors. I know some of you would rather I just posted fertility boosting recipes for hormone balancing cocktails, and talked about the most fertility enhancing yoga poses. We can do that too. There is certainly plenty of that information in my books and our site, and all over the World Wide Web. And I promise to keep returning to those subjects with creativity and gusto in the months to come. Right now, if you’re looking to draw support and strength for your journey, there is nothing more energizing than knowing that you are doing your best in fulfilling the task you have been assigned. As I see it, those of us who are traveling the scenic road to parenthood are being asked to increase the total sum of truth, and justice in the world of baby making, a vitally important arena. May this be a season in which the voices that guide us become a little easier to hear, and the miracles that surround us at all times become a little more visible. Julia and the Fertile Heart Team

15 Responses to “Rebels with a Cause: Unbiased Infertility Advocacy-An Oxymoron”

  1. Kimberly says:

    Julia,

    I am very new to Fertile Heart. I have read both of your books repeatedly. In fact, I continually find myself picking it up and re-reading a chapter here and there just for renewed inspiration. I will be attending my first phone circle this coming Monday and I am very much looking forward to it. Is it Monday yet?

    I feel like I have stumbled onto a goldmine. Prior to finding you, your books and your website, I was hearing what people had to say and giving it a shot but never really feeling anything trigger within me. Then, I came across your book and it was an instantaneous and resounding YES within . . . What you offer and share with all of us is monumentally encouraging and motivating!

    I have much work to do but so far I am loving the journey that began when I picked up your first book. I’m already learning how to listen to my Inner Authority. I’m making changes in my life that seem right for me. And these are changes *I* feel I should make. That seem right to me. Not changes being made because I was told it should help. If it feels right, then I’m rolling with it! That alone makes me feel so much more empowered and HAPPY! I still have a ways to go but I’m getting there and enjoying the ride.

    I have not yet met you, Julia. . nor have I had the pleasure of talking with you but with one brief email yet but already I am extremely thankful for you!

  2. Monica says:

    Julia,

    I am that reader from Germany who was referred to you through her Harvard trained endocrinologist. I find the title of this entry apt – Rebels with a cause. Ever since I’ve started on this journey, I’ve mostly encountered skepticism and disbelief. Its tough to journey on my own, with only myself to cheer me on. The tools and the ideas remain vivid but one needs guidance and support to fuse them into one’s life. I am so grateful for your work. One easily gets steered towards the medical route of IVFs and hormonal therapy, but this is one journey that you have to map out for yourself. It makes sense – looking for the answers from within yourself. I needed many weeks to realize that the Fertile Heart way isn’t a quick fix solution. Its a journey I need to take to be ready for my not-yet-born child. And I do so gladly and humbly.

    Thank you again Julia from the bottom of my heart, for having taken this journey and guiding us all through it now.

  3. Anna says:

    I heartily agree with Jane above as another Brit keen to swim against the fertility industry tide that is gathering a pace here in the UK. I love the idea of starting a list of doctors, consultants and therapists of all persuasions who truly ‘get it’, who really listen and empower you rather than choosing to scare the hell out of you. My impression is that there are enough of us here in the UK to start to have a more visible fertile heart community here and look forward to our European Phone Circles where we can explore what that will be and then make it happen.

    Thanks Julia for the Rebel Rousing!

  4. jane Molloy says:

    Dear Julia

    London Calling!!! I can’t think of a better way to say thank you than to spread the word, particularly here in the uk. The ‘Infertility’ bandwagon is gaining ever increasing momentum here with very few people or organisations respecting, promoting and utilising a woman’s own inner wisdom. Looking forward to the weekly European phone circle!

  5. Jeanette says:

    Thank you Julia, for providing a road for the journey to parenthood. Quite honestly, if a clinic had told me I would have good chances of conceiving using their protocol, I’d probably have done it. That wasn’t the case, however. My system basically just shut down with the hormones and I produced empty follicles. Since then, I have been searching for the Answer, that one definitive thing I can do to create a healthy child. I am starting to suspect that that answer has always been within me. And you are providing the tools to set it free. I do wish I had heard about you years ago and I will happily help spread the word to others who so desperately need to hear your words. Thank you, thank you, thank you!!

  6. Caroline says:

    Thanks Julia, for your energy and drive, for your relentless commitment, and for your love of this planet and the people living on it, which shines out in your work. I haven’t done much work with you yet, and what I’ve done so far has been in fits and starts, but the more I read and listen, the more your truth resonates with me, and I know you can help me get to places I need to go. I hope I can do something to help you in your work too.

  7. Denyse says:

    Thank you for such an eye opening post. It is so very sad that such a personal, important issue gets wrapped up in “politics”. Where one’s desire for power subverts their common sense. Thank you for all you continue to do to help women, their children and families and their health. The gift of hope you give to women beaten down by “mainstream medicine” is truly priceless.

  8. Darlene says:

    Julia,
    Thank you for this posting. It helps to know what we’re up against. After being diagnosed with high FSH I was told by my doctor that there was nothing more that could be done, by them or me. At the time I felt lost, scared and believed without doctors I would never conceive. Despite this bleak outlook, I was desperate for something I could do. I turned to my acupuncturist for any book or group she could recommend. Thankfully, she told me about Inconceivable. In it, you showed me I wasn’t alone, there was hope and I was the one in control. After reading The Fertile Female and attending the Woodstock workshop I’m working with your tools. Everyday I’m learning more about myself and making my own choices to live a more fulfilling, positive, empowered life.
    I know I could go back and have my FSH levels checked again or start up with another clinic, but it hasn’t felt right. And while I’m still on my journey to my child I’m also traveling to a healthier mind, body and spirit. I can’t thank you enough for all the work you do! Looking forward to the Jan. 11th phone circle.

  9. Marise says:

    Just want to add my 2 cents by saying that when my husband discovered Julia and bought Inconceivable for us to read, I had no idea the journey we were embarking on. We learned that the power lies within and that’s why usually our voices are suppressed, because to gain awareness of our own power goes against the current medical practices who are there to make money out of our vulnerabilities. I must say though that I’m grateful we have the technological advances at our hand, but we must learn to use them after we have done our inner work.

  10. Laurel says:

    Hi Julia,

    I wanted to offer some of my own reflections to others who are wanting to know more about the fertileheart work and the gifts that one can receive in just a short time of working with some of the tools you offer.

    The Fertile Heart workshop, the phone circle, and many other practices I am connecting to and making space for in my life is bringing me to new understandings and more clarity. I love what I have heard from your work that this journey-whatever the journey should be on “our terms”.

    I thought many times before heading down to NY for the workshop “maybe I shouldn’t go to this”. I am SO glad I did.

    Julia, the entire 15 months this has been happening for me, there has been a little, soft voice saying to me that this is not about the physical, that what is happening to me is about the emotional and spiritual. That the circumstances leading up to and the state of my life is what needs attention, love and compassion in order for my body to have the energy to create new life. Yet, this voice even though I have a wonderful mother and sisters who support it, gets bullied and convinced by the medical world of statistics and science that it is a lie and no use. Your workshop was the first time I sat in a room and heard 20 people asked “is what you want possible for you?” and ever time I answered for myself “yes”. That was powerful. Thank you.

  11. Eva says:

    Hi Julia,

    Thank you for this post. It is as potent as any hormone balancing cocktail or yoga pose because it demonstrates the power of truth (as usual, you lead by example).

    Eva

  12. Kristina Jensen says:

    Hi Julia,

    I’m grateful that my husband and I discovered your work early in our journey toward our baby. It’s helped me to be kinder and gentler to myself, and ask my husband more openly what I need from him. I think what infertility clinics, mainstream docters don’t understand is that you are probably their biggest ally. When women work with the entire picture of who they are, what they have to give to a child, and prepare body and soul – treatments probably have a better chance of working. It’s only been about 2 weeks since I’ve started following the suggestion to listen to what my body is telling me, and I’m grateful that it will be a wise guide telling me when and what treatments could be beneficial. I’m happy that I don’t need to rush into them right away. On our first appointment with a reproductive endocrinologist, my husband and I felt completely overwhelmed and rushed. Reading your book and attending the calling circles (only 1 so far) has given us back the sense that we don’t need to rush to fit in a bunch of stuff that might or might not work. We can take it slow and discover what is right for us. The biggest fear that I have about getting pregnant is that I will get my hopes up, have a miscarraige, and be too depressed to try again. The fertile heart approach is much kinder and gentler, and I need that right now. It is starting to help me feel that my body is my friend rather than my enemy. I’m not as scared now – I know that my husband and I will be very sad if I don’t go full term with a baby, but it will not destroy us.

    It seems to me that if I was a doctor and heard about something women could do do increase their chances of conception, I would be happy. How does ignoring potentially life-giving information uphold the hippocratic oath?

    Thank you for sharing your longing for children and your generosity of love with all of us.

    Kristina in WI

  13. Cathryn says:

    Hi Julia and everyone,

    I’m posting for the first time, although I’ve been on several phone circles. I finally found the space to write and say thank you for this wonderful work. The fact that you do it without an “industry” behind you is very powerful, and I hope to support you!
    In the past year, I’ve been struggling with irregular cycles, fluctuating and high FSH, and numerous experiments with food/drink, acupunture and Chinese herbs (both of which I stopped in October), and just feeling like I’m swirling in the middle of so many small inputs of information without much coherence. Attending Julia’s workshop in September, and making changes based on what my body, my orphans, my visionary, and my UM tell me has been the grounding I needed to feel better about this process of conception no matter what the oucome is. Our discussions of ancestry and traditions, of the limits of medical models, and how to make honest choices have been especially helpful. This was one of the few weeks I have been consistently practicing the imagery exercises, and I am finding that although I don’t always remember them, my dreams are quite strong and vivid, so I hope to continue this and learn more from them over time. I’m still hoping for a biological child but I’m concurrently pursuing adoption and it all feels very right at this moment. Listening (or at least trying to listen) to my UM actually makes me feel like a hugh weight is lifted off my shoulders (i.e., what I am supposed to do according to everyone else)!
    At this time of holidays and new year renewal, I want to say thank you again and I look forward to hearing others in the phone circles, and I too will join the rebels group as soon as I can. Meanwhile I talk about your work to many friends who are facing the same or similar circumstances!
    My best,
    Cathryn

  14. Maria says:

    I’m already signed up for the rebels with a cause! :) It wouldn’t let me at the beginning, then I figured it was because the amount to pay was $0, I changed it to $0.10 and it worked!!! :)

    Thanks Julia for everything you’ve done and keep doing for us, I use you as one of my images very often in my imagery exercises, and it is very empowering! Every thing you do, and stand for comes flying to me, and makes me feel great :)

    I’m looking forward to finding out how I can help you.

    Maria

  15. Christina says:

    Thank you for your courage, Julia what you’re saying definitely rings true after what I went through last year. We actually went to a meeting sponsored by an advocacy group in our area and it was basically an advertisement for the local clinic. They really pretty much talked about success rates and said how after 35 you were advanced maternal age, and showed a graph of how fertility drops sharply after 40. It depressed the hell out of me. No doubt about it that infertility is big business and everybody is competing for patients. We were actually told first by one of the clinics one fee and when we said we decided not to go through it, they lowered the cost of the IVF and unfortunately we decided to do it. I really think it messed up my cycles. My doctor said that’s not possible that the drugs are out of your body very quickly but I think my body is just beginning to bounce back. Much of it is thanks to what I’m learning in your books and in this community. I also commend you for your incredible dedication to creating this kind of community. I agree with R.D. what you’re doing is very different from anything else out there. It would be awesome to have a referral list that comes from other women and not from a listing that people can just buy into. Count me in for your Rebels team!!!!.



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