BY JESSICA FEIN

When my husband and I started fertility treatments decades ago, the only person I told was my sister. This was pre-social media and pre-living out loud. It wasn’t that I was embarrassed, it’s that I thought what we were going through was intensely personal and not anybody else’s business. 

One day at work, three women decided to collectively share the fact that they were all pregnant. They danced from cubicle to cubicle waving their ultrasound pics. My colleagues cheered over the white blobs and murky waves. I ran to the bathroom and hid until they passed my desk. Nobody at work knew what I was going through, and I’m sure the women would have been mortified if they had any idea how their joy twisted a knife in my sorrow. 

A few months later, I was going on a business trip where I was required to share a room. Along with my “casual business attire” and laptop, I brought three-days worth of medications and needles I’d use to inject the fertility meds. I imagined what my colleague/roommate would say if she found my supplies and figured I should tell her my secret before she came to the conclusion that I was shooting up something other than concentrated hormones.

It wasn’t her response that surprised me, it was how her response made me feel. She was appropriately sympathetic and supportive. She told me her sister had gone through fertility treatments and that she’d even helped her with the intramuscular shots a couple of times. She let me squeeze her finger while I counted to three before inserting the needle in my thigh and became my confidante through the subsequent years of treatment. 

And suddenly I felt less alone. I’d thought if I told people what I was going through I’d feel even more different. Instead, I felt seen and held. 

Fast forward a decade or so, and there I was, yet again, in a situation that felt utterly isolating. When my daughter Dalia was 9, we spent three months in the PICU after a cold became pneumonia, leading to extended intubation and, ultimately, a tracheostomy. When we left the hospital, it felt like we were bringing home a newborn. Dalia was so fragile. There was equipment we didn’t understand and dozens of protocols we needed to master. 

The difference, of course, is with a newborn everyone is celebrating. There are friends and family to show you the ropes and spell you so you can take a nap or have a night out. With our daughter, nobody could relate in any way to what we were going through. Everything we were experiencing felt foreign to the people in our village. It was as though we had been plopped in a new country where nobody spoke the language we were desperate to learn.

By now, of course, social media was ubiquitous. It was possible to find people who’d been thrust into medical parenting, ambiguous grief, and pervasive uncertainty just like we had.  

I’ll admit that at first I lurked. I read other people’s vulnerable accounts of what they were experiencing. I realized there were in fact people who spoke our new language, they just weren’t people I knew personally. 

Slowly, I began to share. I was careful at first because talking about my fear or anxiety felt like a betrayal of my daughter. How could I be afraid or anxious when she was handling what was happening to her body so gracefully? 

But the more I opened up to other parents who could relate, I realized that my feelings were valid. Together, we could talk about our big fears, and our small ones too. We could say we spilled a syringe-full of meds all over the bed sheet and the other person would know what we were talking about. We could share that we felt a level of exhaustion that made our month-long bout of mononucleosis seem like a visit to Canyon Ranch, and we’d get it. 

And something unexpected happened. Sharing that I felt weak or unequipped for the task at hand and being able to have supportive conversations about that made me stronger. I began to speak more authentically not only with people who “got it” on a personal level, but with others in my world, too. I didn’t broadcast my fears widely, but I communicated more openly with the people I trusted. I loosened my armor. In turn, people had a deeper understanding of my reality and a greater appreciation of what life looked like for my family.

So many medical parents and grievers I talk to tell me how much they hate it when people say, “you’re so strong.” I hate it, too. But if we don’t share the mess and the beauty of our lives, how can we expect people to appreciate that what looks like strength is an amalgamation of fear, courage, fierce determination, frustration, sadness, boundless love, and so much more?

Over time, I’ve not only become comfortable with sharing my story, I’ve become committed to it. I now see that inviting people in isn’t only a way to connect authentically, it’s also a way to raise awareness about rare disease in general and my daughter’s disease, MERRF Syndrome, in particular. 

But more than that, sharing my story is, by definition, a way to share Dalia’s story. It gives me license to talk about her, honor her, and extend her legacy – all three of which bring me joy and are my mission now.

Stories open our eyes and open our hearts. When we share our real story, not the shiny polished version, other people learn about us, and equally important, we learn about ourselves. 

James Joyce taught us that, “in the particular is contained the universal.” Nobody’s story looks exactly like our own, but the more we can share the truth and the glorious and goriest details, the more people can connect and relate. It took me a while, but I know that now.  

And I don’t hide in the bathroom anymore.

Jessica Fein writes about the mingling of joy and sorrow, mothering a child with a rare disease, and staying rooted when life tries to blow you down.  Listen to her podcast, “I Don’t Know How You Do It,” wherever you get your podcasts. Her memoir, Breath Taking: Rare Girl in a World of Love and Loss, is coming in 2024 from Behrman House Press. Visit her website or connect with her on IG for real talk about love and loss @feinjessica

Jessica is a CPN Blogger in Residence, an opportunity available through support from Sanofi.