The world of infertility is a special place, one where – from the patient perspective – you don’t want to be. If you are, you are already upset. It’s a world you would rather not to have known.
It starts with your period coming, month after frightening month. Then you compare notes with your friends who have kids. Something is wrong, so you start with Dr. Google. When the cyber doctor is not enough, you visit a real live one; sometimes more than one, sometimes many more than that. The longer you find yourself waiting, the more kinds of people show up: for starters, there are the nurses and laboratory technicians. Then, if you find yourself in the sub-universe of ART, there are embryologists, mental health professionals, genetics specialists, financial consultants. For those who travel the still smaller universe of third party reproduction, the involvement of attorneys, patient advocates and support groups is inevitable. Not uncommonly, the matter of infertility can take over your life. Over time, you find that you have a first name relationship with pharmaceutical reps, lobbyists, politicians. You find yourself suddenly interested in legislative initiatives in the arena of family building. You look forward to National Infertility Week, and you are marching with RESOLVE on Washington. Congratulations – you’ve become a “professional” infertility patient.
Of course, that doesn’t mean that there is no way out. Many whose “pathway to parenthood” is a protracted one do eventually find themselves successful, despite the long journey. Usually, that long hoped-for baby catapults them from that difficult world. But some very special women and men stay on, joining those still waiting, all the while finding ways to make the fertility world a better, smarter, more successful place than it is. That last group shares a lot in common with the doctors they first met at the start of their fertility journey. Their accumulated years of wisdom, which they’ve paid for with hefty quantities of personal pain, help them see the same things that confront fertility specialists every day. We share the same frustrations. I learned how much so at a recent political forum, during which I made some new friends in the world of infertility.
This blog has its origin in the few hours I was able to spend with these special women, veterans in the world of infertility and professionals in many and varied ways. Specifically, it’s about the “expert problem” that we shared.
One woman who has been through the “IVF war” unsuccessfully put it best.
“As soon as I hear the words ‘why don’t you just….,’ I cut off the conversation and ask the well-meaning person not to finish. There is nothing she or he can tell me to do that I haven’t already done.”
“As in ‘RELAX’,” I say with a good degree of sarcasm, filling in her blank. Listening in, another agrees. She’s been successful after a long battle, but well remembers the pain.
“Yeah. I heard that for five years! Like it was our fault.”
People who have never experienced infertility seem not to understand two basic facts about reproductive failure.
First, infertility is a disease. It has many causes, many (but not all) of which are known. Relaxing, taking a vacation or – my personal favorite – “not thinking about it too much” does not restore fertility to an otherwise infertile woman. These things will not cause a woman to ovulate if her ovulatory cycle has shut down. They will not unblock her fallopian tubes if they are blocked. They will not restore the quantity or quality of her eggs. They will not raise her partner’s sperm count or correct genetic diseases. To be clear, I am all for stress reduction – whether by behavior modification, yoga, acupuncture, massage, hypnosis, prayer or the many other ways that emotional and physical health can be improved. But this is because the feeling of well-being is important in order to keep patients facing a medical problem focused and engaged in care until their “moment” arrives. These measures cannot “cure” infertility any more than they can cure heart disease, diabetes or cancer. Do we ever tell people with those diseases to “just relax” and that will end their problem?
The reasons people who have not been personally affected by infertility so freely dispense advice on this subject are not clear. Part of this culture of “expertise” may have to do with the mythology and (pardon the expression) old-wives tales that surround this very emotionally-charged condition. These self-appointed experts may have heard that couples who adopt a baby have a higher chance of conceiving naturally because their stress has been reduced. Not so. They may have heard of a friend who did… fill in the blank: yoga, herbal treatment, megavitamins, pelvic massage. . . and conceived. They may even have a personal history of infertility that ended after they changed jobs, took a spa vacation or swore off certain foods. Here they commit the cardinal sin of confusing anecdote with medical science. We cannot extrapolate from the one to the many. There are lots of things that worked for someone. There are no things that work for everyone. And, indeed, the constellation of issues that can cause any given woman to have difficulty conceiving is large and complex. The answers are not in Redbook or in Vogue or even, for that matter, in the New England Journal of Medicine.
The second of the two basic facts about infertility is, in a sense, another aspect of the “expert” problem. Many times the dispensed advice is not to do something in particular, but rather to see someone in particular.
“If I had a nickel for every person who asked me ‘Why don’t you just see Dr. So-and-So?’ I’d be rich!” another professional patient tells me.
“Me, too,” her friend chimes in. “He is the doctor blessed by the Lord Himself. Magic hands. A miracle worker! So exalted you need to wait months to see him, and then hours in a crowded waiting room.”
“Wait. Is that the uptown doctor or the downtown doctor?”
“What’s the difference? We’ve seen them all.”
“One returns your calls in a week; the other, never.”
“Seems you’ve both had your share of chasing the secret of life,” I say, perhaps too wryly.
“I already know what the secret of life is.” This one has my attention. I perk up my ears. The secret of life is that . . . there is no secret!”
My thoughts, too, but not exactly. Every day patients transfer their care to our practice because someone suggested that we can do what no one else has yet been able to do. At the same time, every day patients transfer their care from us to elsewhere, also chasing that same secret. “I wish so-and-so would come to see you,” is a refrain I hear all the time. And I know this is difficult to swallow, but, alas, I must fully disclose – I also don’t have the secret of life. One thing is, however, clear. The longer the doctor has been practicing, and the more successes he or she has, the more people there are out there who perceive that he or she truly does have the secret in hand. (Of course, it does not hurt if the PR department can promote that in subliminal ways.) This is the reason that, although I practice with incredibly bright and talented young doctors, no one has yet accused them of having the secret. (Just wait, I’ve had to reassure them – because what mortal does not want to be perceived in this way? – this will inevitably happen.) But, let’s face it. For most patients with even a reasonable prognosis who are getting appropriately attentive care, pregnancy will happen over time. The doctor with the secret of life is de facto the one treating when pregnancy finally occurs.
This brings me to our philosophy of care at GENESIS. We will always practice at the cutting edge of medicine, but we will never be unique in that way. (Nor would we want to – we prefer for every patient to get good care.) We will always contribute to the scientific underpinnings of our field by engaging in and sharing the results of our research, but among our colleagues in New York we’ve got plenty of company. We will always teach young medical students and physicians; doing so keeps our minds and skill sets sharp in ways that help our patients as well as our students. But that is a duty to medicine felt by many who work in academic medicine.
What differentiates us will always be the feel of our practice, the human touch that is felt by each patient who reaches out to us in her hour of need. Our staff of professionals work in unison with one goal: to support our patients until their goal is reached. Our staff routinely refers to each other as part of their ‘GENESIS family.’ Together, we feel our patients’ anxieties, their hopes, their fears. We share their sadness one day; their joy, the next. Our accessibility and communication with patients is legend. We are chronic “hand-holders.” Each of us understands the role we play in the outcome, even though not one of us is alone in charge of the outcome. Our goal is to keep our patients comfortable, focused, knowledgeable, hopeful and – perhaps most importantly – realistic about the potential pathways and the possible time frames to pregnancy. And that’s the way we want it.
There is no secret of life here. But we will stand beside our patients and give them great care until the secret comes their way.
f you would like to learn more about GENESIS Fertility or are ready to schedule an appointment, please speak with one of our New Patient Specialists at 718-GENESIS (718-436-3747)
