The Chronic Grief of Infertility

In 2019, three things happened that would irreversibly change my life. In January, I miscarried our first child. In May, my dad unexpectedly passed away. And in June, I was diagnosed with PCOS, a condition that is marked by reduced ovarian function and issues with fertility.

Both the miscarriage and subsequent PCOS diagnosis, and the death of my dad were losses that came with their own grief, their own mourning and denial and despair. But one grief has dulled. One has not.

The death of a loved one, and especially an unexpected death, is like getting in a car crash. You’re driving down the street, windows down with the wind hitting your face, listening to your favorite song, when suddenly, WHAM.

You hit someone, or did someone hit you? Glass shatters and metal crunches as everything is sent spinning and whirling. Maybe you black out. Maybe you stay conscious. But no matter what, the experience is disorienting. A millisecond of action or inaction, a turn taken too quickly or a red light run, changes the course of your day entirely.

And not just your day. Maybe you’re injured or your car is totaled. One moment miraculously stretches itself into weeks of financial stress, physical therapy, and frustrating back-and-forth with your insurance company.

But, unless your car crash is incredibly severe, you recover.

The car gets fixed, or maybe you buy a new one. Over time, the physical therapy fixes the whiplash in your neck. You’re a little freaked out by driving at first, but eventually the crash fades until it’s nothing but a distant memory.

This is how it has felt to lose my dad.

His death was completely unexpected. I was returning to work from lunch with a friend when I noticed that I had a missed call from my grandma, who rarely calls me. Still parked outside of the Indian restaurant, I called her back. That’s when I felt the impact, when the glass shattered, when my world suddenly spun out of control.

Those two moments, the moment my dad left this earth and the moment I found out about it, expanded to fill days, weeks, and months. I cried in my car every day during my morning commute for weeks. Almost everything I saw, heard, or did triggered his memory, and with it, a fresh wave of grief. And while wrestling with the growing abyss of loss inside of me, I had to help write his obituary, plan his funeral, and get his affairs in order.

The few months after I lost my dad were absolutely miserable.

But, slowly but surely, grief ran its course. Things started to get better.

As time went on, I cried less often. I was eventually able to look at old pictures of my dad or remember things we did together without derailing my entire day. I could find joy in the time we had with him instead of only finding despair in what time was lost.

The sharp pain of grief, over the last year and a half since I lost him, has faded into a dull and intermittent ache, like a formerly broken toe that only hurts when it’s about to rain.

Don’t get me wrong; unlike a car crash, the loss of my dad will never fade into my memory completely, and milestones that he should be there for, like getting a new job or going to grad school, will always bring a fresh wave of sadness. I still think of him every day, and miss him just as often. But the worst of it is over. My dad is already dead. I can only heal from here.

The grief associated with our struggles with infertility, however, has been a completely different story.

The grief that comes with struggling to have a child is like living with a chronic illness.

Much like the shock of a car crash, the initial diagnosis leaves you reeling. You realize everything you know and do may have to change to accommodate this new reality. The pain may never go away. The symptoms may never subside. You feel instantly overwhelmed as you think about all the ways this diagnosis will touch every aspect of your life.

The initial shock fades over time, but it is replaced by a heaviness you carry with you everyday and everywhere. Every time you are invited out with friends, you notice your house is in need of a good deep clean, or maybe even when you get out of bed in the morning, you are forced to think about your illness. How am I feeling today? Can I physically handle this task? What will I need to do to make it through?

And with that heaviness and those questions comes infinite micro-griefs as you are forced to reckon with all the ways, little and big, that your life has been marked by this illness. You mourn all the canceled lunches with friends, all of the family trips you spent back at the hotel, all of the things you used to love that you can no longer do, and all of the things you haven’t even attempted to do because you know you just can’t. Each grief feels fresh and new and just as difficult as the last.

New treatments and remedies might bring hope and temporary relief, but with every failed treatment comes the sinking feeling that you may never feel better.

This is what it feels like to experience infertility.

The initial diagnosis of PCOS was a complete shock to me. I’d never had many of the most common PCOS symptoms, and no one else in my family had struggled with conceiving.

We thought my miscarriage was just a bump in the road, that we’d be able to recover and conceive successfully and forget the whole thing happened. PCOS put that plan into jeopardy.

My diagnosis caused me to reassess so much about my life. Suddenly, eating healthy wasn’t just about feeling good; I’d need to maintain a strict diet to manage my symptoms. Some symptoms, such as the stupid dark patches under my arms that make it look like I never shave even though I totally do, would probably never go away. And every hormonal transition, pregnancy to postpartum to menopause, would be about ten times more brutal.

On top of it all, there was a chance I would really struggle to have kids.

Initially, I was feeling optimistic. I figured that if I’d conceived once, I could conceive easily again. I just needed to fix whatever had gotten off track since my first pregnancy.

Soon after my diagnosis, I found an integrative doctor in Denver who had helped many women with PCOS reverse their symptoms through nutrition and supplements.

I went on an insanely strict diet for nearly a year. I didn’t eat gluten, sugar, dairy, grains, beans, mushrooms, cashews, peanuts, onions, among many, many other things. I took upwards of 15 supplement pills a day. I drank bone broth smoothies. I dry brushed. I drank 100 oz. of water a day. I even tried to eat calf liver (that’s where I drew the line).

Nothing helped. Eight months of hard work, and I had nothing to show for it. All of my vitals and bloodwork improved — except for my reproductive hormones.

Finally, this summer, we decided to start working with a reproductive endocrinologist, or a fertility doctor. After a battery of tests, my PCOS diagnosis was confirmed and because I’d already done a year of strict nutrition to no avail, our doctor recommended that we go straight to treatments.

We are currently in the midst of that process.

In the last year, my initial devastation about our fertility challenges has been replaced with a heaviness that I will carry with me until I am done having children, and likely even beyond then.

As someone with chronic illness is forced to come to terms with the limitations and challenges of their illness daily, we are forced to come to terms daily with the fact that we cannot conceive.

We are reminded every time we see a mom and her toddler walking down the street together, every time someone asks us if we have kids, every time someone gushes about motherhood, every time we are invited to a baby shower, and every time we see yet another Facebook pregnancy announcement.

We are reminded every time we have to move around our work schedules for doctor appointments, every time we have to remember to pack our mini-pharmacy of supplements and medications when we travel, every time I have to give myself a dreaded injection, and every time I have to cook myself alternate food for family gatherings to accommodate my dietary restrictions.

Every one of these micro-griefs feels as painful as the last. We are chronically sad, chronically heartbroken, chronically grieving what was already lost and what may, if treatments fail, never be.

Because we are living with this every day, because it’s been over a year since I was diagnosed and since I miscarried, many people we know think we are “over it.” They think we’re doing well. They think that because they’ve forgotten, we have too.

Yes, we’re going to work. We’re going on vacations. We’re doing normal-people things, living our lives the best we can. But we are not over it. We are actively grieving every single day, every single month the test is negative, every time we have to start the whole dreaded process over again.

It is exhausting. It is painful. And it is so, very lonely.

Unlike so many chronic illnesses, there may be a cure for us. But like so many with chronic illnesses, we have good days and bad. And hope is often in short supply.

When I lost my dad, people who had also lost a parent said, “Hang in there, it gets better.” When we lost our child, people who had also experienced pregnancy loss said, “You’ll never really be over it until you have a baby.”

The first statement was right. I wish the second one weren’t.