I have wanted to talk about what I do for a living on my
blog, as it has come to be a main avenue toward helping me cope with my
infertility and losses. I am a professor of interpersonal and family communication.
In part my job involves research, which includes conducting research studies
and writing research articles. In this post I would like to share the story of how
I came to the idea for the first study I conducted on infertility. I will also
share the article that is being published—a different type of art than I have
typically shared on my blog.
In the fall of 2010 I was grieving the loss of our first
baby O.B. to miscarriage. I was devastated and desperate to find a way toward
redemption in the face of O.B.’s death. As a researcher interested in how
people communicate in the face of difficulty, I became fascinated with the way
I was treated during my infertility care. As a patient I was mortified by this
treatment. And so began my quest to do something positive in O.B.’s name and to
help myself heal at the same time. In this first study, I investigated compassionate
care.
I admit that my interest in this topic has to do with the
lack of compassion I have experienced during my own treatment. I have been
wanting to share some of my horror stories for a long time but haven’t done so
in defense of those who, despite their lack of compassion, are still a part of
my journey, still the people who helped me bring my daughter home. Despite what
they have done to injure my identity and esteem, I slowly have come to realize
that much of the reason for their mis-care isn’t because they are bad people,
but because they function in a system that places a number of roadblocks
between themselves and patients. Among others, these include a privileging of quick
patient turnaround, lack of insurance coverage for infertility care, and the
absence of training that teaches providers how to communicate with patients in
caring and compassionate ways. So I share some of my worst treatment
experiences here not as a means of defaming my providers, but rather as a means
of calling attention to a system that is in severe need of restructuring. I
like to think that O.B.’s research study on compassion was a small step forward
addressing this need.
The very first infertility appointment I ever had was a
doozy. I made an appointment with my OB/GYN because we were trying to get
pregnant but I was having cycles that were between 40 and 70 days long. After
weeks of waiting for an appointment, I sat anxiously in the waiting room
amongst a dozen pregnant women and piles of pregnancy and parenting magazines. I
was an outsider. When my name was called, a nurse I’ll call Barb took me to a
little room for more waiting. I could hear everything the doctor was saying to
the pregnant couple in the room next to me. Barb came back in and started
asking questions. “Your chart says you run?” I knew what she was implying as
she looked my small frame up and down. “Yes, but only a few miles at a time
right now.” Her retort was, “Well maybe you should stop off for some ice cream
half way through.” She left the room and I was left feeling disciplined. Finally,
the doctor came out of the room next door and I could hear him whispering with
Barb. She told him I was waiting. “Oh my infertility patient is here!” he exclaimed.
My first thought was, “Oh great now I have to wait for him to see someone
else.” But then I realized the “infertility patient” was me. I seemed to be the
last to know. Barb then went on whispering, giggling that she told me I should
eat some ice cream on my runs. He entered the door to my room boisterously. I
had been keeping track of my cycles with a computer program and had my brightly
colored graphs to show him. He scoffed and told me I could throw them in the
garbage, as they would not be helpful. He took away all my efforts at trying to
control an uncontrollable situation. We talked awhile and he was finally
getting to what we could actually do to help me get pregnant when his pager
went off. He left the room and came back in and apologized and said he had to
leave to go deliver a baby. He said not to worry because, “Soon it’ll be your
baby I’m off to deliver!”
After trying Clomid
a couple of times to no avail, this same OB/GYN offered me the opportunity to
participate in a clinical research trial. The study included wearing a GnRH
patch for a full cycle. The purpose of the patch was to induce ovulation as a
means toward pregnancy. He convinced us that participating in the study was a
great deal as we would be able to have a number of tests and get lots of
information about what was going on with my body for free. Unfortunately, it
was anything but advantageous. The patch was not like those bandaid-like
estrogen patches used in many infertility treatment cycles. This patch had a
plastic battery-pack type thing attached to it. I wore the patch on my upper
arm all day every day. Every hour and a half it would release the GnRH in 10-minute
intervals. The release felt like bee stings. For 10 minutes straight. Every
hour and a half. All day and night. For a month. I felt like I was being stung
because the patch was literally burning my skin. A research nurse monitored me
closely and I can remember her taking pictures of the burns and how other
nurses came in to gawk at my arms. Because of the burns, the nurse had me move
the patch to my stomach. My stomach then quickly had burns all over it. Despite
this torture, never once did anyone step in and remove me from the study. You
might wonder why in the world an educated person who is well-versed in the
ethics of research would allow herself to continue down such a painful path.
But the answer is actually quite simple: You tell a woman desperate to have a
baby that there is a chance, and she is willing to do anything. Not only did I
not get pregnant, but the doctor never gave us all that information he
promised.
Another one of my worst experiences with infertility care
came on the day when I had my second miscarriage. I was experiencing a lot of
bleeding and so one of the nurses at my clinic had me come in right away. As my
reproductive endocrinologist performed the ultrasound to check in on things, he
barely said anything. When he was done I asked if he could see the baby and he
tersely said, “We’re going to talk about that. I have other patients who are
here. I hope you understand that.” And he left the room quickly. We were
speechless. As we sat waiting to have some blood work done, a really cute
pregnant drug rep was talking to one of the business office workers. They
loudly discussed how great she looked and how the pregnancy was going. A little
later we were back to the main waiting room and waiting to meet with the
doctor. The cute pregnant drug rep had made her way to the receptionist who was
also pregnant. Cutie launched into how ugly maternity clothes were and how she
was just making regular clothes work for now. I sat there miscarrying my baby,
without knowing if that was what was really happening, while listening to women
discuss the clearly dismal perils of pregnancy.
Unfortunately, these are just a few examples of the
abhorrent care I have experienced on my infertility journey. To this day I feel
a bit ashamed that I allowed myself to be treated in such ways, quietly taking
it like the good girl who respects authority that I am. Why would I want to do anything
to piss off someone who had the power to help me get a baby? At the clinic
where I received most of my care, I felt stuck. I stayed through three IVF
cycles because my doctor offered us a reduced price after each cycle that did
not end in a live birth. As he put it, we did not receive a return on our
investment and so he was willing to cut us a break.[1]
Because our insurance does not cover any type of infertility treatment, we
sacrificed our desire for compassionate care for thousands of dollars in
savings.[2]
When thinking about what kind of study I might do for O.B.,
my initial idea was to figure out what compassionate care really looks like in
hopes of being able to offer providers insight into how to treat patients as
opposed to simply providing lip service to compassion as a selling point.[3] I
also wanted to investigate how doctors' compassion impacts patients’ treatment,
psychological, and relational stress because I wanted to show that providers’
treatment of patients matters on a number of levels. So that is what I did,
surveying about 200 women. I won’t get into everything I found in the study here.
If you are so inclined, here is the link to the article. There should be 50
free copies of the full text article. If you are not able to see the full text
and would like to, please feel free to email me at ewiller@du.edu.
This study doesn’t address or fix all that is broken about
infertility care. However, I do think it makes a small potential step toward
the type of treatment that acknowledges, respects, and reduces suffering during
what is often the most traumatic time in infertile couples’ lives. For this I
am proud and find great meaning in O.B.’s short, nine-week life.
[1] I
often felt guilty about being given a break, but it helped that our doctor
parked his Porsche in the patient lot right in front of the building.
[2]
This thought is heartbreaking, as our situation is not unique. Only 15 states
in the U.S. require some sort insurance coverage for infertility. Along these
lines, important to note is that my privilege allows me to be able to afford
assisted reproductive technology, as the majority of infertile couples in this
country cannot even dream of affording such care be it compassionate or
not.
[3] My
clinic lauded compassionate care as part of its mission statement.
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