Lonesome Journey: One Woman’s Reflections on Infertility

“It is one thing, I was discovering, to think, “Maybe I won’t have kids,” and quite another to be told, “Maybe you can’t.” This is how impatience turns to desperation.”- Peggy Orenstein

In general, infertility is defined as not being able to get pregnant (conceive) after one year (or longer) of unprotected sex. Because fertility in women is known to decline steadily with age, some providers evaluate and treat women aged 35 years or older after 6 months of unprotected sex (https://www.cdc.gov/reproductivehealth/infertility/index.htm)

It sounds like just a timeframe.

The definition does not take into account the strain of infertility; the strain on mental health and joy, the strain on relationships, the strain on finances.

Many women who cannot conceive within the defined timeline choose to do elective fertility treatments, which may be as simple as taking a medication or as complex in-vitro fertilization. In some cases, fertility journeys can last 5-10 years, which may effectively lead women to forgo having children as they age beyond safe childbearing years.

In some cases, the journey doesn’t have an ending. Or, rather, it does, but not a joyful one.

This post is written anonymously by a woman with long-term, unexplained infertility. Although it is only one woman’s experience, many of her reflections and observations have been echoed by other women I have spoken to, and may considered almost universal.

She wrote to me after completing the post and expressed that the writing was cathartic.

Please honor her journey by reading her poignant words.

“My fertility journey has lasted 7 years so far. I went off birth control at age 30. I spent 2 years trying ovulation sticks for timed intercourse, 2 years trying vitamins and acupuncture, 1 year of IUI (intrauterine insemination with shots), 1 year break, and finally, 1 year in-vitro fertilization (IVF).

I learned that I was impacted by infertility when I attended an acupuncturist specializing in infertility. After a year, she recommended we look for an IVF specialist and gave us a list of names.

I also had some co-occurring health conditions that impacted my fertility journey. I had PTSD before starting my fertility journey. The EMDR and somatic experiencing therapies I had received actually prepared me well for the fertility issues. I could observe the triggers and patterns in my body, and had a template to follow to help me cope. Plus, I had learned before about non-negotiable weekly self care for my mental and physical health. I continued these supports throughout the journey; this prolonged my endurance and healed me from many of the new traumas I faced.

I’m allergic/intolerant to many foods and medicines. This made the IVF experience nerve wracking because I was always fearful of a negative reaction to the pills, injections, and vitamins. I was on over 30 new medicines over 4 years, but fortunately only 3 of the meds gave me dangerous reactions.

One of the biggest surprises for me was that, for my sensitive body, deciding to undergo fertility treatments with a reproductive endocrinologist was going to temporarily affect every domain of my life. This webinar has a slide describing the way it affects your personal and professional lives, your financial plan, your relationship with your partner, your sexuality, and your social life. (https://www.reproductivefacts.org/resources/educational-videos/videos/educational-webinars/videos/surviving-the-roller-coaster-emotions-of-infertility-treatment/)  I would add your spiritual life, as well, because you are electing to modify the chemical processes in your body that affect your mood, sleep, concentration, and critical thinking–basically who you are as you know it. This is a risky endeavor for some women, since some aspects of the treatment can cause lasting effects. When we had struggled getting pregnant on our own, at least my physical body and mental health were more under my control. The IUI/IVF experience for me involved a complete handoff of my physical and mental wellbeing.

My fertility journey came at great cost.

• $75-100K in total over 4 years. The total would have been closer to $125-150K but last year my husband switched to a company with benefits for IVF, which saved us at least $50K. 
• I didn’t pursue promotions at work because I could hardly function professionally during IVF.
• I never submitted applications for a PhD program because I was waiting to have kids first and worried about the cost. Before I knew it, 5 years of my life had passed.
• I stayed at a company years longer than expected because I believed that, one day, it would be a flexible work-from-home job, perfect for a mother with small kids.
• I couldn’t travel (for fun or work) for months/years at a time because my regimen included restrictions on altitude changes. I missed out on work conferences, new global experiences, interacting with colleagues in person. This was very limiting for my sense of adventure and for my career.
• Due to fatigue and other physical issues, I reduced my social interactions to about ¼ of what they had been before. Anything I did attend, I had to RSVP as a “maybe” because I could never guarantee how I’d feel on a given day and whether or not I could bring my refrigerated medication to do injections.
• I lost my right fallopian tube due to an ectopic pregnancy, which also cost me a year of healing scar tissue and associated pain issues. For years when I got my period, I felt stabbing pain due to hormones causing swollen tissue in the area. 
• I never comfortably settled into my home office (hung up things on walls, purchased adequate furniture) for 3 years, because I had wanted it to be the baby’s room.

I also felt that I lost a sense of social connection with others in my life.

When a woman is pregnant, it is a joyous occasion and our culture openly celebrates this and surrounds the woman/family with support. With infertility and grief after a loss, people aren’t sure what to say and distance themselves. Things get really awkward. The saddest thing for me was recognizing that almost no other women in my life could truly understand my pain. Infertility created a chasm between me and the women in my family (all of whom had children), me and my closest girlfriends (who were exhausted from raising their own children and wanted to talk about that), me and my work (a focus on child development), and me and society at large (because I couldn’t seem to fulfill the traditional next steps of our culture…to start a family of our own). 

One friend of mine wrote me an email a year after my loss admitting she had been so torn on what to say since she had learned she was pregnant the day of my loss and never felt it was the right time to tell me.

There is almost no way to shield yourself from other people’s success with fertility. Commercials, schools, family photos–all of these are reminders that other people were able to procreate and you were not.  If humans need connection to survive, then having infertility must shorten the lifespan in painful ways. 

Overall, while going through infertility and loss, I felt a deeper connection with women in my pregnancy loss support group who still weren’t mothers yet than with anyone else. From what the counselor shared, the emotional distress of primary infertility is different than with secondary infertility because women are blocked out of joining the club of motherhood. There are biological compulsions to procreate and if you are still working on creating your first child, then you are grieving that hardship in addition to grieving the inability to join the motherhood club and the larger social legacy.

Speaking of it being difficult to connect with others who don’t understand, there were many unhelpful things said to me that just made everything harder.

A trauma therapist said after hearing my fear of returning to IVF after a loss, “It sounds like you have given up,  that you don’t want to continue trying.”  She couldn’t have been more incorrect and I felt so unseen. Later when I switched to a therapist specializing in IVF, I learned that it is normal after pregnancy loss to feel overcome with fear/anger/grief/terror, while at the same time fueled by a tenacious, amplified desire to conceive again. Both were true, which is paralyzing.

Some other things that stung:

“My baby shower is this date. I would love to have you there. Here’s the invitation.”

“Whenever the baby comes, don’t worry, I’ll drop everything and help you.” Did that mean my ability to have a baby is the determinant for me to receive care and support from you as a friend? 

“Stress really affects fertility. Maybe if you relaxed more or stopped trying, it would just happen naturally.”

“Raising children is the hardest thing you will ever do.” I disagree. Losing children or not being able to have children at all when you want them may be harder because there is no upside, no silver lining, no beautiful moments of any kind. 

In addition to impacting my relationships with friends, my infertility also affected my relationship with my partner and how I saw myself.  I was envious that IVF only affected a few parts of my partner’s life, not all of them. He could have breaks throughout the day or week where he didn’t have to think about IVF, whereas I could not unzip out of my body for a break. I couldn’t be productive at work (or even at home) because of the negative side effects of the medications, whereas he could continue operating.

Even though it didn’t make logical sense, I blamed my body for being broken. I felt like less of a woman because I was having trouble conceiving (our situation fell under the category of unexplained infertility). I thought, maybe if I just…. eat healthier, exercise just enough (not too much), meditate and practice yoga, take vitamins, lessen my stress at work and home…I would get pregnant naturally. That ended up not being the case for me. I also felt like less of a good educator (and a bit of a hypocrite) because I couldn’t advise professionals on working with kids using experiences from my home life. 

If I could go back and speak to myself at the start of this journey, I would tell myself, “This is a journey that will not follow your typical “set a goal and achieve it” pattern. It will have you question your self-efficacy and move you toward surrender. This journey mimics a hike into an unexplored wooded terrain. You have hope, expectations and a plan, but you can’t control the weather, your body’s reaction to poison ivy, and new seismic activity in the region after a long period of dormancy. You embark on the journey because it feels right and can picture an image of success, but since no one else in the world has shared your exact biology and environmental conditions, you must extrapolate, experiment, and endure–without guarantee of a positive end result”.

If you are hoping to support someone going through a fertility journey, there were a few helpful things said to me and done for me

After a pregnancy loss – From an infant/pregnancy loss support group leader – “What is remarkable is that, after decades of listening to painful stories of loss and the worst 1% of tragic outcomes, I have never met a couple here that hasn’t tried one more time to become a family.  Some couples take years, months, or weeks to grieve, but eventually they are all ready to take the risk to love again–in whatever form it may take.”

Research shows that infertility is as psychologically challenging as having cancer. https://pubmed.ncbi.nlm.nih.gov/8142988/#full-view-affiliation-1

Psychologists who specialize in infertility sometimes write informal “prescriptions” to prohibit your attendance at a baby shower. 

“Would you like me to drive you to an IVF appointment/treatment/blood test?”

“I’ve been through this, and it was terrible. Call me anytime if  you want to vent.”

Even though it has been incredibly challenging, I have gained things from this 7-year process.

• A profound sense of empathy for those grieving–especially those who had miscarriages, stillbirths, unsuccessful rounds of egg harvesting, embryo creating, or implantations, surrogacy, or never could have biological children.
• A sensitivity to connect with other people’s suffering, to discuss difficult topics, and to relate. This allows me to create a safe space for their journeys too.
• A ferocity to create political change to secure women’s rights to healthcare, such as abortion, IVF, mental health support, and pelvic floor physical therapy. 
• Increased closeness with and absolute trust of my partner.
• Pride for my resilience. After my ectopic, I was shaking every time I entered an OB or IVF doc’s office. I had to mentally prepare myself for continued endurance which was more challenging than just giving up.
• A reminder that this is not a just world. There are absolutely parts of life that cannot be controlled. Terrible things happen and it has no correlation to being a good/bad person.
• A stronger connection to nature and the greater universe. 
• Extra time to bond with my partner without caring for children.
• Gratitude for my body. It can survive truly tortuous experiences and does its best to protect me. It can heal itself, re-regulate and bounce back when given TLC.
• Awe for the strength of women for their ability to endure.

Note from Heather: I have deep appreciation for this author for sharing her thoughts on what has been acutely difficult on her mental health, sense of self, physical health, and relationships.

#Infertility

#MaternalMentalHealth

#Depression