Misinformation Is Worse Than No Information

It’s easy to reach the conclusion misinformation is worse than no information when you see how half-truths can radically adversely influence lives. While infertility has been documented as early as the biblical era it’s only recently, as science has advanced, that we’ve heard it discussed in more than whispers. My generation was lulled into believing that science many years ago cracked the fertility code with “test-tube babies” only to learn — usually too late — that not all infertility is alike.

There are myriad complications and contributing conditions and diseases. Each case is different. No magic bullet exists. The treatment success rates are miserably low and don’t improve with time. Infertility is a bitter pill to swallow but the blogosphere and online communities have proven that it goes down easier when we are more realistically prepared for what’s to come and have adequate support to manage the what ifs.

If there’s one gift we can give the next generation it is to share our stories so those coming behind us are not caught unaware. Our goal is to inform, not to scare. Nature and science have limits.

Correcting misinformation is a never-ending job when it comes to infertility.There’s no shortage of work and, depending on the scope and reach of inaccuracy, it sometimes feels like fire fighting. You put one out over there and another flames up. (I was reminded recently of the scene from The Gods Must be Crazy. Remember the mythical rhinoceros that instinctively ran to stomp the fires out?)

Some of us are driven to set the record straight on terminology (you can’t implant embryos you can only transfer them). Others take on the bigger challenge — reaching out to well-meaning but short-sighted celebrities, which is the subject of my next interview. I learned about Julie and her online community, Infertility Awareness, from Renee. She pointed me to a letter Julie wrote to celebrities Giuliana and Bill Rancic. This passage in particular had me nodding my head furiously.

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This morning on the Today Show you said, “One is six couples struggle with infertility. If you stick with it and never quit, it will pay off.” I’m here to tell you that is not true. We stuck with it for 12 years. Lost 8 babies. Tried to adopt for three years, and had 2 FET cycles with donor embryos. Yet, we are facing a life without children. It does not “pay off” for everyone unfortunately. And I find your statement rather upsetting because it implies that my husband and I did not do enough.

You can read Julie’s full text here: Letter sent to Bill and Giuliana Rancic.

My first thought after reading her letter was, “Amen, sister.” My second thought was if Guiliana and Bill are going to take up precious air space and act as spokespeople for one of the most misunderstood conditions around the least they can do is be accurate. It’s dangerously misleading to say treatment “will pay off,” and deceives the public into believing that success is, ta da, inevitable (it’s not). Further this “blame the couple for not doing enough” adds insult to injury by inviting anyone in earshot to judge couples who are childless not by choice harshly. While we do get back on our feet, we don’t need any help making the adjustment tougher, thank you very much.Julie, as you can see below, graciously agreed to answer a few questions.

Your letter generated lots of likes on Facebook. How did you convey the letter? Did it go to the Today Show? I sent the letter to Bill & Giuliana, both on Facebook, and extended an invitation to our Facebook page. I also sent one to Bill via his website. And I did send one to the Today Show via their website as well.

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What stands out from the FB comments you’ve received? What stands out is that people assumed I was bitter about the Rancic’s having a child. Which is not the case at all. They put themselves out there as an infertile couple, which I applaud. Infertility needs exposure so people understand it. By doing so, they are Ambassadors for Infertility. People look up to and admire them and will take to heart the things they say. Therefore, they need to be careful about what they say, how they say it and consider how others may interpret it.

You made clear that there’s harm in perpetuating the myth that success is inevitable. Is this what led you to create Infertility Awareness? I know how tragically isolating infertility can be. I wanted to reach out to others who might feel alone. Then I realized that during my 12-year journey I learned an awful lot. One visit my RE told me that I knew more than most of his second year students studying infertility. I thought if I can help a few people not feel alone, then I thought I could help others learn from my experiences, things their doctors and nurses may not teach them. For instance, if you use injectable meds that are kept in the fridge, take them out and let them get to room temperature 30 minutes before your injection, it will be much less painful. I just started out with little tips like these and was amazed at the response I received.

How has informing other women about your experience led to new insights? Sharing my experience with other people, woman and men, has helped me find a purpose in my life and it’s helped me to feel like my 12-year journey was not a waste of time. Many of the women on our page have said I’m like a mother to them, in that I am nurturing them in their illness. That really warms my heart. I hope to start a foundation one day called “Julie’s Hope” and I’d like to be able to help support people financially with their treatment, because money is what kept us from continuing our journey.

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If you could create talking points for high-profile spokespeople who only focus on the family building successes, what would you want them to convey? I appreciate when celebrities share their infertility stories, but they need to remember that the general population does not have the financial resources that they have, which makes for an entirely different ball game. On the other hand, it really upsets me when older famous women become pregnant and have babies and do not reveal that they used either donor eggs or donor embryos. This may lead young women to believe they have plenty of time, which is not the case.

I recommend your book Silent Sorority because I want people to start considering the fact that they may not have children. I never considered that fact until it was staring me in the face and I think it made it very difficult for me to come to terms with childlessness. I try to encourage the people on my page to consider life without children, so if that is what happens, it’s not such a shock.

Now, readers, it’s your turn. What talking points would you create for celebrity spokespeople?

You can read more stories about women raising infertility awareness and sharing their experiences in the Tapestry of Voices category.

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28 thoughts on “Misinformation Is Worse Than No Information

  1. HAT

    I would also like people to know it’s not always the Woman who is the one who is the … well there is not a good way to say this but you know what I mean the problem … it’s not. Sometimes a man, through health problems. no Testosterone, and no sperm . None. And the thought of Donor sperm was just out of the question. But people always assumed it was a “just relax and you’ll get pg” and it totally wasn’t.

    Also Adoption is NOT actually as easy as it sounds. We tried for 8 years, and could not get approved, through CAS (because of our religion but they won’t say that) and they never actually out right say NO. They say they want you to go to counselling to deal with some issues (but they won’t say for how long) Financially private or international adoption was always out of the picture. Now Finally accepting childlessness as our reality, I feel like I wasted a lot of time because I thought it was going to happen. CAS keeps telling the media they need good parents, and all our friends and family who really know us agree we would be amazing parents. Many were very upset when we decided to quit and they wanted to call the CAS and yell at them for denying us kids.

  2. “I appreciate when celebrities share their infertility stories, but they need to remember that the general population does not have the financial resources that they have, which makes for an entirely different ball game. On the other hand, it really upsets me when older famous women become pregnant and have babies and do not reveal that they used either donor eggs or donor embryos. This may led young women to believe they have plenty of time, which is not the case.”

    So true.

    This is such a great post Pamela and Julie. Kudos to both of you for trying to set the record straight here. I really appreciate everything you shared and agree that misinformation is often worse than none at all. Well said.

  3. Pamela: marvelous and much needed post. I’m reminded of when I watched that ridiculous episode about infertility on The (new) Ricki Lake Show and one of the guests basically said that PCOS damages your ovaries when your cysts rupture. *facepalm* Thanks, non-medical expert for that load of BS. Misinformation is indeed very damaging.

    This is a very interesting and understandable statement from Julie: “On the other hand, it really upsets me when older famous women become pregnant and have babies and do not reveal that they used either donor eggs or donor embryos. This may lead young women to believe they have plenty of time, which is not the case.”

    It’s so hard, b/c on one hand – would we put that burden of public disclosure on regular Jane and Joe Schmoe? Is that origin story information their right to disclose? To play devil’s advocate (especially as someone who did go the donor route): why should a celebrity by any more obligated to disclose the nitty gritty details of their fertility treatment journeys than the average person?

    That said: I understand how helpful it can be to have famous people with whom you can relate. To this day, I still long for strong Asian role models, as a half-Japanese woman. I’d love to see a celeb who’s used donor gametes or embryos come out and be public about their journey, but sadly, I just don’t think it’s going to happen any time soon.

    Which, I find interesting, given how glamorized celebrity adoption has been (Brangelina, Sandra Bullock) and even surrogacy (Nicole Kidman, Giuliana and BIll). But for some reason, donor egg/sperm are still hush-hush and it happens WAY more often w/celebrities than most people realize.

    Fabulous post, Pamela – off to share! :)

  4. You & Julie bring up an important point here. It’s great that we have fertility treatment to offer, and it’s even better when it works. But what happens when it doesn’t? Nobody thinks about that (because nobody WANTS to think about that — certainly not the clinics, who make their money by continuing to dangle carrots in front of you that you might try next — a new protocol, donor eggs, pre-implantation testing, etc. etc.).

    I agree with Julie that’s it best to have that conversation early on — having a stopping point & a plan B in mind is one of the things the infertility counsellor we saw recommended. Even if you ultimately decide to give it another try, at least you’ve given the matter some thought. It doesn’t lessen the hurt you feel when you arrive at that point of your journey — but as Julie said, it’s not quite as much of a shock to the system.

    As for celebrity spokespeople — I agree, it would help if they acknowledged that (a) not everyone has access to the resources they do & (b) they used donor eggs (if they did). I understand some celebs’ desire to protect their privacy & that of their children — but if you’re going to set yourself up as a spokesperson on infertility, I think you owe it to the public to acknowledge the whole truth.

  5. CDE

    “why should a celebrity by any more obligated to disclose the nitty gritty details of their fertility treatment journeys than the average person? “

    That’s a good point, but I think that to the extent that celebrities serve as the public face for any number of things (including the celebration of motherhood, as any gossip magazine cover will attest), whether they choose to keep the details to themselves (totally appropriate) or to disavow – tacitly or otherwise – the use of ART when they benefitted from it (not cool) makes a big difference.

    I’m thinking of Julia Roberts’ “I guess I’m just an overachiever” comment here. Anyone savvy to ART can look at her age and her twins and say “mmm-hmmm, suuuuuuure”, but if you’re just starting on that journey, that’s a high-profile example that says you just need to work hard and it’ll, yep, pay off. Even if you aren’t, I think it’s a big slap in the face to people who are struggling to conceive because it either minimizes that struggle or suggests that it’s shameful enough to lie about entirely.

  6. PIP

    To answer the “why should a celebrity by any more obligated to disclose the nitty gritty details of their fertility treatment journeys than the average person?” In this case, B&G were directly talking about conquering infertility, and they have publicly made themselves the face of IF, getting cheers and taking jeers and certainly the checks for selling their story. Therefore, they absolutely have a moral obligation to tell the story correctly. If they chose to be quiet about it, then there is no obligation of them. That was not their course of action, and they should not become publicly amnesiac about the facts of IF, now.

  7. The part about the financial resources being less finite for celebrities is an important point. If you have unlimited time and/or money, you can pursue family-building until you get what you want. There’s more of a level playing field for time between celebrities and regular folks, but not always so for money.

    I echo what Keiko said about celebrities being under obligation to reveal what the rest of us might consider private details. To wit, we should be careful thinking that they are (under obligation).

    Great interview, good points.

  8. Hmmmmmmm…
    On the one hand, in general, I’m not sure that celebrities have an obligation to tell us exactly how their children were conceived. (Or, if they were conceived in the plain-vanilla way, what they were wearing or where they were at the time; really now.)

    But clearly there is a problem happening here, and I think Pamela’s title sums it up very well. The celebrities aren’t so much withholding – it’s more a problem of lying. I haven’t read this Julia Roberts interview, but “I’m just an overachiever” means (or is intended to make the reader think) “my body just did this naturally.” Unless science and nature have turned themselves on their heads for her (she’s well over 40, yes?), that’s an outright lie. And, yes, that is harmful, I think. If the procedures are objectionable, don’t use them. If they’re fine, don’t lie about them. I have no problem with her never bringing the topic up, and confining herself to statements like “I love my children” or “I’m very blessed to be a mother.” Of course, that’s unrealistic when you’re a celebrity – people are going to come right out and ask you how the kids were conceived, and then they’re going to put the answers in print. It’s not like she can just not lie AND not answer (which is an option for normal folks).

    But there I have to say – live by the sword, die by the sword. The reason she’s getting asked these questions is because she’s doing interviews. And she doesn’t have to do interviews. She (or her publicist, with her approval) has determined that she can continue to make millions of dollars having a movie career if said publicist calls magazines and harasses them until they agree to publish pictures of her and an interview with her (because that is how these things are done – when a star has a movie coming out, the publicist goes on a saturation campaign to plaster the star’s face all over everything everywhere for months before the premier, to help the movie sell better). She’s determined that she can pimp out the idea of a window into her life – not innocent questions about her favorite food, music, and art, but intimate questions about her relationships, heartbreak, sex life, and procreation – into a source of income. That’s how she makes her money. (And I note that there are celebrities and actors who do NOT do this, who don’t do interviews, who stay out of the public eye. That’s very different.) I’m sure it all sounds more attractive to her when it involves talking about how happy she is and how wonderful her life is than when she might have to admit that she’s not an “overachiever” at all, and she spent $200,000 getting a doctor to get her pregnant because her husband/fiance/boyfriend/lover/stranger on the internet couldn’t do it. But so what? If you want to laugh all the way to the bank selling tell-all interviews to the checkout-line glossies, fine. But don’t then claim that your privacy is being invaded. Nobody invaded it – you just sold it.

  9. As always I am glad you posted this. I saw that interview and remember my ears perking up when they said that sticking with it will pay off. I agree that telling their story has been helpful but that conveying the message that everyone will be successful is extremely misleading. Hopefully they will pick up on the message sent to them and will offer a way to explain better what infertility means.

  10. Wasn’t there an interview with Jennifer Lopez after her twins were born (in People, I think?), where she denied using fertility treatments (even though there were sightings of her at a clinic in NYC) and said something like, “Deep down, I guess I just really wanted it.” Like if you really, really WANT it enough, it will happen. Thanks, JLo. :p

  11. Charlotte

    I feel very strongly about us issue too. As always Pamela you are right on the nerve of what affects us childless women. There have been a number of celebs over the years who it has been rumoured used ART to conceive including Nicole Kidman, J Lo and Mariah Carey yet they choose not to own up to using fertility treatments. While it is their right to privacy I think their silence maintains the shame about having to use ART and having children through those means. We all know how painful those feelings of shame can be. More public openess by public figures is essential to reducing the stigma and shame.

    I am disappointed about G and B’s statements. It is too easy once you are on the other side to make comments like that and become almost smug about your “success”. I too tried IVF for years and now at 35 am still childless and will remain so. However I still get the comments from people that “it might still happen” due to these miracle stories.

    I just heard Prince William and Kate are having a baby and had to turn off the tv. I can only imagine the depth of media coverage this is going to get and how it will make me feel.

    Keiko, I understand your comment about few Japanese role models. I read the biography of Princess Masako once and it highlighted her struggle to conceive an heir. Her husband the Prince had mumps as a boy and it is likely is infertile. I believe it is rumoured they used IVF to conceive their daughter but there was no public acknowledgement of that. I also understand that the pressure to produce a make heir and IVF took its toll on her and she became severely depressed and is rarely seen out in public. Again, the shame of using ART prohibits openness and good quality sharing of real life stories.

    When you tell people you are unable to have children, don’t you find a look of incomprehension fills people’s faces? The majority of people just cannot understand that concept, which I believe is directly related to the selling of the fantasy in the media.

  12. Diane in Maine

    Not about celebrities but about the “if you don’t quit” misinformation: I’ll never forget what my department head, a miserable old busybody, smugly said to me during my TTC years: “If it was me, I wouldn’t give up until I had my children.” (Easy for her to say, she had four.) I left that job twelve years ago. A few weeks ago I ran into her in a public place and pretended I didn’t remember her. Petty of me, but I guess it was my revenge for her kicking me when I was down. Celebrity or not, it’s not o.k. for anyone ever to gloat about fertility.

  13. great post, as always, Pamela!

    I had 10 unsuccessfull IVF treatments.
    So – sticking to IVFs didn’t pay off.

    (and – I prefer not to think about the damage I did to my body with all the awful infertility drugs)

  14. Pamela, Thank you so much for giving me this opportunity. I truly appreciate it.

    I was just screaming at Bill “WHAT! I didn’t try hard enough???? Didn’t want it bad enough???!!!”

    And yes, people STILL imply that we did not do enough, even after our 12-year journey. We didn’t want reallllly want children…

    As for being in the public eye, no I don’t think all celebs are required to disclose how they became pregnant later in life, but when they CHOOSE to be a spokesperson, I believe they are then obligated to get it right, and do us a disservice when they say things like Bill did.

    And no, I have still not heard from the Rancic’s or the Today Show.

  15. It’s usually the IF woman or couple holding their baby/s that is going on about “never give up”. It’s easy to say that, even after many have followed my journey and seen for themselves that even DEIVF is not a sure thing. I’m glad Julie wrote that letter, sadly not surprised by some of the comments she received. I guess, we, childfree after Infertility, have to continue to make noise.

  16. SIF

    Sad to say, but even within the infertility community – there is that judgment towards women who walk away from treatments. Just a month or two ago I received a comment from a reader along those very lines – that it made her angry (her actual words) that I talked about IVF failing me, because I really hadn’t tried hard enough in the first place. I read Julie’s letter when she first posted it and thought she was spot on. We don’t want to perpetuate that myth any further that it will always work if you just try hard enough, or that by walking away – you clearly don’t want it enough. It simply isn’t true.

  17. Inconceivable

    From the “It’ll will *never* happen department.” I’d like someone to mention, maybe every millennium or so, that sometimes childlessness happens to single people who find out VERY early in life they’ll be that way, not just couples, and NO amount of treatments of any kind can help.
    -ChildlessDueToBornWithInconceivableFemaleParts

  18. Jen

    It was frustrating to hear Bill Rancic say, “If you stick with it and never quit, it will pay off.” I have had infertility for almost 7 years, and my husband and were forced by finances to quit treatments. The wealthy infertiles can keep going with unlimited IVFs, treatments abroad, multiple surrogacies, you name it. They are in a *very* different world than the average middle-America Jane and John Doe. I’m happy you got your baby, Bill, but you’ve frustrated infertile people even more by saying this.

  19. CoolAunt

    Nobody talks about the “money” aspect of it near enough. It is devastating.

  20. I love this, and bravo to Julie. If there’s one thing I hate it is hearing these platitudes:
    “work hard and it will pay off”
    “everything happens for a reason”
    “it is God’s Will”
    “our prayers were answered” (I found Bill Rancic quoted saying this too) etc.

    They ALL imply that we either didn’t try hard enough, or that for some reason, God/The Universe/whatever decided that we shouldn’t have children. But that logic never works – because if it works one way, it has to work the other. And I don’t think the accidental and unwanted or just perfectly normal pregnancies are “meant to be” any more than ours are “not meant to be” or that they are more deserving so their prayers were answered anymore than ours were deliberately ignored, etc etc.

  21. EKD

    @Inconceivable. I knew early on too but it didn’t stop me from trying everything and believing in miracles. I was talked down on because I told my family what the doctor told me and in reply, I got “who’s report will you believe” meaning the man (doctor) or God.

    I like the Rancic show but like it’s been said we are regular people, with regular finances etc., If Giuliana is going to be a spokesperson do a “reality” episode and show people how painful it really was to think you might not have your on child. Don’t just look in the interview camera and say you had a rough day, blah blah blah, show the tears. But unlike the regular people, she had hope in the back of her mind but it’s spelled “MONEY”.

    Its all a joke. @ Pamela, I concur, It does not “pay off” for everyone unfortunately. My last attempt was surrogate but we can’t afford it and of all things an evaluated was part of the process.

    What crack head, teenage drop out, woman with multiple partner’s do you know who had to have a “physiological evaluation” before getting pregnant and having a baby!

  22. Kat

    We are still working to accept a non-child status in our home. One thing, for me, that would make a big difference would be to have children in our lives. (The reasons are far too complex and lengthy to explain, but we are not able to adopt or foster, either.) Many people have nieces and nephews in their lives. We do as well, but they are not close physically or emotionally, and so having them fill that place doesn’t work.

    I have spent quite a lot of time trying to find children who need adults in their lives either as mentors or respite care for the family. We do not have Big Brothers/Big Sisters in our area. I have called the local social services departments and the local shelters. The response i get from these places invariably is to “Just sign up and foster.”

    I would like to see something come about where organizations like Big Brothers/Big Sisters expand so that it is possible to mentor a child or provide a place for children to stay when they need it. I don’t think i’m explaining this well. I know there must be families in our community where the parents would appreciate someone being an “aunt” or an “uncle” to their kids, but i cannot find it. Not for lack of trying, either.

  23. Fantastic post, Pamela! I can’t imagine where I would be financially, emotionally or physically if I had taken the advice to “never give up”. Actually, what allowed me to move on and find some peace was knowing in the beginning of this Herculean adventure is that there would be a point when I stopped if it wasn’t working.
    I have certainly felt some judgement for stopping. I have had people imply that I must not really have wanted it if I didn’t do x,y or z. I did want it. But I also wanted peace and health and not to be financially ruined.
    As always, I so appreciate your shining a light on this topic. You do it with extraordinary wisdom and grace.

  24. […] treatments will succeed” and for that I applaud her doubly. She’s smarter than other celebrities who share misinformation on success […]

  25. […] my blogs I’m committed to eradicating ignorance and elevating awareness about the high failure rates of reproductive medicine, as well as the need […]

  26. […] You can read what both Pamela and Julie have to say on the topic here. […]

  27. […] The online conversations here and across my blogroll reveal not only where we’ve been but how much we’ve achieved.  We’ve set a new truth benchmark in an era marked by fertility medicine misunderstandings and misinformation. […]

  28. […] and what it felt like.  Let’s be clear, I know this topic is fraught with danger. Misinformation or ignorance on this topic can be mind-boggling. That’s why if you’re not there, yet, with opening […]

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