“The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friends, we have all manner of words and phrases, some helpful and some not. Still, we are conditioned to say something even if it is only “I’m sorry for your loss”. But for an absence, for someone who was never there at all, we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?”
Recently, the world celebrated the 40-year anniversary of the first IVF (In Vitro Fertilization) baby being born. Since the first IVF birth, over 1 million babies have been born in the United States through the use of IVF or other assisted reproductive technologies. In the past 40 years, there have been many medical advances made in the field of Reproductive Medicine, however much is still unknown.
Medical treatment for infertility, no matter the advancements, cannot offer guarantees to couples and individuals seeking reproductive assistance. Many individuals that begin fertility treatment report feeling hopeful about the outcome of their first treatment. Why wouldn’t they? The average cost of one round of IVF treatment is estimated to be around $23,000.00. As a result, a full course of treatment is an exclusionary factor for most people. Statistically, approximately only 20 percent of couples are successful on their first round of IVF treatment. This statistic includes women aged 35 and younger. For women 35 and older, odds of successful pregnancy and live birth are much lower. At age 44, they are closer to 1 percent. Despite the odds and being faced with these statistics, many couples remain hopeful aboutbecoming pregnant. At the outset of their journey many couples are excited to share their plans with close friends and family. For most, the level of excitement diminishes with each negative pregnancy test and they begin to experience a lack of desire to involve their friends and family in the process.
One troubling, but common, experience is the lack of information given to families about the process. Many women report a lack of preparation for the length of time involved, and how all-consuming the treatment process can be. Some report waiting an average of 3 to 6 months from initial consultation with the doctor to the first round of IUI, or first embryo transfer. Many women report needing an array of diagnostic tests that can only be done on a certain day of their cycle. Some also require invasive procedures and, at times, surgeries to diagnose or fix the underlying issues that may contribute to their infertility. When time is of the essence, there is very little that can be done to speed up the process. Long periods of waiting are filled with countless visits to the clinic, many intrusive tests and procedures, as well as medical and hormonal treatment. Many women have to overcome their fear of needles, as the treatment may require daily injection of hormones for days, weeks, and sometimes months at a time. It takes tremendous amounts of courage and determination to go through such an emotionally and physically painful process. Very few come out of the experience without deep emotional scars.
There are many painful emotions associated with infertility. Many women report feeling shame, guilt, and worthlessness because they are unable to get pregnant without medical interventions. They feel betrayed by their bodies that failed them and their partners. Feelings of anxiety, hopelessness, worry and pessimism, can be intensified by the uncertainty of whether the treatment will work. Feelings throughout each cycle can fluctuate from hopeful and optimistic to discouraged and heartbroken within days or even hours. Each unsuccessful cycle takes an emotional and physical toll that can be challenging to recover from. Some couples go through many years of invasive treatments and procedures to achieve their desired outcome. Even after having their baby, it might take months or years to regain a sense of normalcy from the experience of infertility.
The experience of infertility can lead to feelings of isolation and loneliness. Some women report finding their well-meaning, but uninformed, friends and family make comments that are insensitive, intrusive, or hurtful. They may hear countless times comments such as: “Just stop trying. Trust me, the minute you stop trying to have a baby, you will get pregnant” or “You just need to relax more. It will be so much easier to get pregnant if you cut out stress from your life.” Women also report feeling jealous or resentful of those around them that seem to conceive with ease. Seeing close friends or family members announcing their pregnancies, attending baby showers, baptisms, or birthday parties can be extremely difficult for those experiencing infertility. Social withdrawal is common for those affected by infertility. Removing oneself from social interactions and family celebrations furthers the sense of isolation. Many contradicting feelings arise as some women feel guilty or selfish for their feelings of resentment and anger as they are unable to celebrate happy moments in their friends and family’s lives.
The following report depicts one woman’s experience with the effect her infertility had on her close friendships:
“I was standing in the kitchen with two of my closest friends. I smiled and nodded as they cheerfully talked about breastfeeding and bottle warmers. It took everything in me to not run out of there crying. As, I am standing there, I am reminded that a year ago both of them announced being pregnant with their second child. Now, as they are experiencing joys of taking care of their beloved babies, I am devastated and heartbroken. I have known them for more than 10 years. We cheered and celebrated each milestone together. Graduating college, getting a dream job, engagements, weddings. We took trips together, we shared our deepest, darkest secrets with each other. We relied on each other for support and encouragement. 10 years later, it feels like they are strangers to me. I am no longer able to be happy and excited for them. For the past 4 years, they celebrated baby showers and birth of their children. Their babies’ first words, first steps, first birthdays. Each of those milestones is another painful reminder that my reality has been so drastically different. It keeps getting harder to be happy for them and to be around them. It is also harder for them to support me through my journey as their experience has been so vastly different”.
How does one get support and encouragement throughout the process? How does one cope with countless losses and also make meaning form the experience? In a candid and rather revealing Instagram post, comedian Amy Schumer shared a picture of her stomach completely bruised from hormone injections. She wrote: “I’m a week into IVF and feeling really run down and emotional. If anyone went through it and if you have any advice or wouldn’t mind sharing your experience with me please do.” More than 30,000 people responded with messages of support and validation, with some sharing their own experiences of how complicated the process has been for them.
Many women tend to seek support in online communities where they get to experience validation, support and encouragement from those going through similar experiences. Many women have an opportunity to learn more about the process and what to expect from various interventions as interactions with their medical providers are usually very brief. However, some studies find that spending too much time on these virtual sites can worsen their symptoms of depression and anxiety. One major problem with online communities revolving around infertility has to do with the amount of false guidance and misinformation. Some women may get too involved in reading detailed stories of bad experiences and treatment failures that may exacerbate their own fears and increase feelings of anxiety in others. Women with a history of high anxiety or obsessive-compulsive behaviors are especially vulnerable to excessive internet searches. It is highly recommended and encouraged to seek help from both a medical and mental health professional who is trained and knowledgeable in issues related to infertility and infertility treatment.
When a person’s ability to have a child is beyond their control, in addition to medical support, guidance from a well-trained Mental Health Therapist is beneficial and essential to ensuring their emotional and mental health is attended to during this process. Many women and their partners may need support in making informed decisions when it comes to fertility treatment and having realistic expectations in regards to outcomes. Mental health professionals can help support and guide you through the rollercoaster process of infertility and offer guidance on coping strategies to manage the powerful emotions that surface throughout the ‘ride’. You can find Mental Health Specialists who have received extensive training in infertility from The American Society for Reproductive Medicine (ASRM). Ewa Florczak has completed this certification and welcomes the opportunity to work with you regarding your personal experience with infertility.