I like to plan my life out far in advance. Like my career as a music therapist, I had a vision for how my life would unfold and hoped for the best. 8 years into my career, two pets, a house and a husband, I found myself excited about the idea of growing our little family. However, infertility laid a different path ahead of us.
Months passed with negative test after negative test. The sinking realization came into focus that this process was going to be more difficult than I had imagined. Thus, began monthly visits with my OBGYN, transitioning to a speciality fertility clinic and finally navigating through full-blown in-vitro fertilization (IVF) treatments. Each step felt like a punch to the gut, as I had been assured time and again by my gynecologist to "just call me when you get pregnant".
I found out last year that I have a pretty intense case of polycystic ovarian syndrome (PCOS). My fertility doctor referred to it as "super PCOS" due to my hormonal levels. In short, my body didn't ovulate like a normal person, which is kind of important from a "getting pregnant" standpoint. This made IVF our most logical choice.
If you're unfamiliar with IVF, it is a straightforward, yet daunting, process. You inject stimulating medications into your stomach to grow many eggs at once, rather than the one or two you'd grow naturally in a cycle. During this phase, you're monitored by frequent ultrasounds and blood draws. Once enough eggs have reached maturity, you undergo a sedated, surgical procedure, called an egg retrieval. This is where your fertility doctor "retrieves" these follicles. Mature eggs are fertilized with your partner or a donor's sperm sample. You wait for five days (years) to see if any of these fertilized eggs become an embryo. If you complete the cycle with embryos, these can be transferred back with, you guessed it, more medication and injections! Following transfer you wait, again, for two weeks (decades) to see if you are, indeed, pregnant. From start to finish, my process lasted about seven months with over 100 injections and needle sticks.
No part of the in-vitro fertilization process is easy or guaranteed. In fact, in the waiver signed acknowledged that this was going to be a very stressful experience. At this point, I thought I was used to stress. Research has shown that women with infertility have the same levels of anxiety and depression, as do women with cancer, heart disease and HIV. You gamble with thousands of dollars and your physical and mental health, just for the chance at having your own child. It is a waiting game with its own challenges, heartache and frustrations. It is an intensely lonely experience, especially since we are taught that talking about infertility is taboo.
Working in Pediatrics
Working in pediatrics, I am not unfamiliar with various waiting games and moments of intense heartache. We walk with patients through some of the darkest times in their lives. We spend time around others' children, using our understanding of development and bonding to support other families in difficult circumstances.
Being around children in the hospital is both a curse and a beautiful blessing. At times, being with infants was comforting. I was reminded how I enjoyed being around little ones and that if was lucky enough, I would probably be a good mom. Other days, being around children hit me like a ton of bricks. The smallest statements or actions that would catch in my throat. Hearing things like "you must have kids" or "you'd make such a good mom", said with the best of intentions, weighed heavy on my heart. A patient might reach out for a hug or to sit in my lap as we played music. I would ache for the opportunity to have an experience like that with a child of my own.
Navigating A New Role As "Patient"
Doctor appointments were now part of my "new normal". Due to the pandemic, I couldn't have my husband with me, enduring every poke, prod, ultrasound and surgery alone.
Being alone for these experiences, I vowed to be a "good" patient and to face each medical task with as much courage as I could muster. Through each challenge, a sonohysterogram, hysterosalpingography, hysteroscopy, laparoscopic surgery, egg retrieval, ultrasound, and embryo transfer, I vowed I would make it through. I tried my best to smile when I walked in for a surgical appointment, even when I was ushered to the payment booth first being assured after with only a, "Well...good luck".
My "good patient" vow eventually led me to a clinic room for an unmedicated aspiration of an ovarian cyst with no pain support or preparation. After two failed, traumatic attempts, I was left alone in the clinic room, bleeding and sweating, trying to cry quickly before anyone came back to check on me. Following this aspiration, it became difficult not to disassociate from my body for all future procedures. It was impossible to get an accurate blood pressure reading as it always read abnormally high. I went numb in my fingers and toes just sitting in the waiting area.
This experience was a defining moment in my infertility journey. I realized I would never tolerate these types of experiences for my patients. So, why was I too afraid to advocate for myself?
When I looked at infertility under the lens of patient empowerment and advocacy, things became more clear. I wouldn't want anyone else to wish away months at a time or feel incapable of playing an active role in their treatment.
First and foremost, I went to therapy. It's crazy that going to therapy ourselves can sometimes be the hardest thing. I developed real coping mechanisms that helped me feel empowered to ask questions and be present and attuned to my own body. I kept seeing my therapist - this person in my corner who understood and specialized in infertility. It nice not having to explain the "lingo" or all that I had gone through. I didn't feel like she would judge me for my thoughts or feelings about this process.
I prioritized myself above anything else. This was especially difficult for me, as I am so dedicated and intertwined with my work. I'm used to speed walking from room to room, skipping breaks and juggling my overlapping roles as therapist, co-worker, employee and supervisor. However, both my jobs: at the hospital and on this website, needed to take a backseat. There just wasn't the same kind of room in my life that there was before. I moved a little slower. I spent more time managing pills, injections and resting for a change! I spent time managing the feelings that came with weight fluctuations, others' pregnancy announcements and the eternal feeling of waiting in limbo.
I invested in relationships that built me up and cut out those that weren't supportive or healthy. I found a sense of community with others online, which often helped me laugh and grieve this journey with people who knew it all too well. I turned back to music, finding songs that empowered me to keep going.
In some ways, the best lesson I took away from this experience was the assurance that it's okay and healthy to prioritize yourself. Wouldn't we want the same for our patients?
This prioritization even bled into how I managed my clinical care. On the days where my heart ached looking at infants, I'd ask for help. I'm lucky to be in a position where co-workers and senior interns could pick up the clinical care I was having difficulty with. Other days, I would only need the listening ear of a coworker to get into the right headspace and provide the support to these families myself. I focused in more on my role as music therapist and my specific goals laid out.
I was reminded in an intimate way what it means to be a patient, navigating a scary and foreign experience. I remembered my own (multiple) breakdowns in clinic and my inability to be my "best self" in times of stress. I remember how hurt I felt when nurses wouldn't take my concerns seriously or even make eye contact with me when I really needed the support.
I became more patient with my patients, families and colleagues. I was reminded that the little things were really the big things, like the care of an anesthesiologist I had before one of my surgeries. He sat with me while the nurse placed my IV and checked on me multiple times before I went under, just so that I knew I wasn't alone. It was the extra few minutes my doctor would spend with me, running through "mental exercises" so that I would feel confident before and after my transfer. I am reminded often how those moments of compassion made all the difference for me.
Looking Towards The Future
I was beyond lucky with my IVF cycle. We landed in the 90th percentile, retrieving 42 eggs, resulting in 12 frozen eggs and 11 genetically tested, viable embryos. Our first transfer was even successful and I am now 12 weeks pregnant with a baby girl. I still can hardly believe it.
I wish I could say that everything is great now that I am pregnant but the anxiety and uncertainty is still there. Even after watching my baby grow and seeing her little heart beat flicker on the ultrasound, I convince myself that something is going to go wrong in our next appointment. I know just like IVF, not every pregnancy is guaranteed. Up to this point, I've kept my pregnancy quiet, afraid that speaking it out loud would jinx it. However, every day I'm trying to learn to live more in an uncomfortable state of "not knowing" but also remaining hopeful. There is space for so many different emotions all at once.
Working in healthcare has also colored my experience in a complex way. On one hand, I am uniquely attached to the care of infants and young children. I am called to provide a nurturing presence while also maintain objectivity and professionalism. I am reminded of the precious role of "parent", hoping someday I can be one too. On the other hand, I have a "behind-the-scenes" perspective of what healthcare is really like. I know the pressures of this fast-paced environment, as well as how quickly burnout can manifest. Especially in environments of stress, it is important to remain empowered and confident - your own advocate.
If you're struggling with infertility, I want you to know that I am sorry. No one or nothing can fully prepare you for the pain and loneliness of this experience. However, infertility is not an uncommon phenomenon. 1 in 8 women will struggle to get pregnant naturally. You aren't alone. If you are navigating this experience, please feel to reach out. This experience doesn't have to be shouldered alone.