Recently, a patient came to see me to discuss the result of her HSG, the X-ray procedure that was done to check her internal anatomy. As I always do, I asked her how it went; more specifically, if she found it painful. She told me that she in fact had no pain at all and that she found this quite surprising. She, like nearly all women who anticipate undergoing this exam, had read a lot about it on the internet. From what she had gathered, she told me that she had expected this to be one of the most painful experiences she would ever have.
“Are you going to write about this on the internet?” I asked her. She laughed and shook her head, understanding my point immediately. Of course she would not. Given that the test turned out to be just another step in her journey to parenthood, she attached no particular meaning to it other than that the result was normal and it allowed us to move ahead with a treatment plan. Like hundreds of thousands of women who have gone before her, she harbored no emotional attachment to this test and so she felt no compelling need to shout out her feelings online.
So why do some patients rage online?
Let’s face it: when it comes to the emotionally charged issues that accompany infertility and its treatment, those who post on the internet are not a random sample of individuals with infertility. Rather, it is often those patients who have had longer journeys, suboptimal results, unrealistic expectations, or have received news that they simply would rather not hear. I know this because I have in my possession thousands of thank you letters from patients who have taken the time to express, in the most profound and heartfelt ways, their gratitude for the care they’ve received. This includes many who have not succeeded under my care, some who have conceived with care elsewhere or, eventually, on their own. Yes, MANY THOUSANDS. Yet, I have only been “rated” on the internet fewer than one hundred times. Why is this so?
Over the years GENESIS has received many thousands of thank you cards and letters from patients expressing gratitude for the care they’ve received.
The reason, I think, is clear and simple – most women and men who successfully complete their journey from infertility to parenthood have better things to do. Their time is too precious to spend wading through the latest rate-your-doctor site. While they know how to send a beautiful card and a picture privately, announcing the details of their journey to the world is another matter completely.
Not so, of course, with those who are stuck on the journey. For them, a post may be a salve for the pain that they rightly feel. If they have lingered long in the medical world to no avail, the bitterness needs an outlet, and the internet beckons. And if, on top of those failures, they have spent large sums of their own financial resources, sharing their understandably deep sense of loss somehow satisfies the need for retaliation.
Which brings us to online patient reviews. One cannot help but wonder how it is that the same doctor who many patients rave about can also attract some posts that scream “DO NOT USE THIS DOCTOR!!” or “WORST EXPERIENCE EVER!!” and other choice invectives. The answer goes beyond the non-random selection process that draws in patient posts.
While I cannot speak for other fields of medicine, individuals and couples who must navigate the medical treatment of infertility live in a frighteningly complex world. It is not just that they are emotionally fragile. It is not just that their insurers tend to think of their need as one of vanity, as if having a baby were the same as having a face lift. It is also not because of the huge pressure that they are subjected to from those who love them most. No – it is not just about the patients. It is also about the medicine.
Infertility treatment is at its core an uncertain science. If it were not, every patient would deliver one healthy baby nine months after her first treatment, every time. While we can only hope for that day to come, that is unfortunately a long way off. As a result, no matter how astute and caring we may be, no matter how well-honed our process for giving that care may be, and no matter how much time we take to inform and empower our patients along the way, some patients have very long journeys. And, truth be told (as we do all the time), some will never get there. That includes those who have unrealistic expectations about their prognosis, those who expect their caregivers to do magic or miracles and those who feel entitled to demand that all their care be rendered at no cost to them.
And there are more things that need to be said about the forums that attract such hysteria. The first is that we as doctors have no control over those who cross our doorsteps to seek care. Reproductive specialists are fortunate in that the vast majority of our patients are lovely, well-informed and a joy to work with. They may be depressed and anxious, but they understand how to channel those emotions in a positive way. A small minority, however, allow those emotions to flow easily toward the medical team. Their default thinking goes like this: if I am not successful this month, it is because my doctor did something wrong; if I made an error in my treatment, it is because the nurse did not instruct me correctly; if my insurance will not cover me for care, it is because the financial team is scheming to take money it does not deserve; and so on. Everyone who fails treatment is upset, but these people feel compelled to unload that emotion on those struggling to keep them focused so that they may eventually succeed. It is not fun taking care of such patients. In fact, every doctor has patients who s/he knows will march straight to the internet at the first hint of dissatisfaction. Caring for them brings little joy, yet dismissing them from our care is an invitation to public criticism.
Everything happens
Secondly, in the field of infertility management, everything happens. Some patients who we think have a poor prognosis become successful (and are a beacon of hope for others). Other patients with excellent prognoses fail repeatedly. Some leave us and are successful elsewhere. Some who failed elsewhere succeed with us. (See The Expert Problem, May 2014) And some who fail – even those with poor prognoses- occasionally succeed on their own. That all of this happens is a reflection of the biological variation and consequent uncertainty that is embedded in this field of medicine. And as long as that is so, NO doctor can know for sure how, when or if that baby will come.
To summarize, everything happens, and all are welcome to post anywhere they choose. As a patient, I assume that my doctor will have my best interests in mind at all times. That is, after all, the oath we physicians volunteered to take. If some posted reviews lead you to believe otherwise, with few exceptions the reason is more likely to lie with the poster than with the subject of that post.
If you would like to learn more about GENESIS Fertility New York or are ready to schedule an appointment, please speak with one of our New Patient Specialists at 718-GENESIS (718-436-3747)
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