I Used to Blame My Rare Disease for Robbing Me of Motherhood

Disclaimer: The opinions in this column are my own. The decision to have children is deeply personal and isn’t universally right or wrong. 

I am 38 and choose not to have babies because of a burdensome rare disease. I’ve decided not to risk the 50% chance of passing on a genetic defect that increases ALAS1 activity in my liver. And in my current reality, I don’t have the energy or the stable health required to be a full-time mom. This decision was years in the making after many emotional conversations with my partner.

At one time, it felt like I didn’t have a choice. But these days, I refuse to feel like something was taken from me.

Mother’s Day has been hard for me since my acute hepatic porphyria diagnosis six years ago. Each year, I gauge the emotional progress I’ve made in accepting my evolving life circumstances, most notably, my decision not to have a baby of my own. It’s a day on the calendar that eats at me, and an annual reminder that somehow I’m not enough.

Recommended Reading

February 16, 2022 News by Steve Bryson, PhD

No Recurrent AIP Attacks With Givlaari, Small Real-world Study Reports

I co-parent two sweet, insightful, hilarious, and clever kiddos. I love being a bonus in their lives, and their places in my heart certainly fill what was once a gaping void. However, quelling the primal, biological pull of motherhood took real intention.

In the last two years, more people in my close circle were expecting children than weren’t. All of a sudden, girlfriends who’d never grown a human were doing just that. While I was genuinely happy for the new and expecting moms in my life, I’ve been in a place where another person’s good fortune angered me, particularly as it related to the limitations imposed on my life with acute hepatic porphyria (AHP). It’s an ugly hole I never wish to fall into again.

I grieved for a traditional version of motherhood, either through pregnancy or adoption. My decision was less about passing along a genetic mutation for AHP and more about ensuring I had the ability to parent full time, with the energy and stability to provide for a baby while managing AHP’s chronic symptoms.

On Mother’s Day weekend, I experienced mixed emotions as I celebrated the moms in my life. I noticed my inner critic had a lot to say. First came thoughts about somehow being less of a woman because I wasn’t going to have a baby. Then, judgment emerged about once again going against the collective social grain, and defining a separate set of life milestones on my own path.

For many, having a child is a touchstone of life. Procreation is a primal instinct with a strong undertow, an urgent and desperate pull. What does it say about me if I identify as a woman but voluntarily choose not to take part in having or adopting a baby?

Well, first, nothing. There’s plenty of reasons not to have children besides avoiding passing along funky health attributes. They are all boring and rational, yet valid. And it seems that plenty of people are choosing not to do so these days. According to a recent Pew Research Poll, 44% of respondents ages 18 to 49 said they are unlikely to have children in the future, and that percentage of the U.S. population may be growing.

Knowing that acute hepatic porphyria attacks are contingent upon elements not always in our control can make us squirm. And in a world of rapidly evolving medical treatments, the uncertainty of our futures increases. We may ask ourselves, “Do I have a baby now, knowing there may be advances coming down the pike? Can I trust that the energy I have this year will be sustainable for 24/7 child rearing?”

It becomes overwhelming, and there’s nothing like Mother’s Day to dredge it all up again.

For those of us feeling an emotional hangover from the weekend, I wish you peace. I still need to work on better understanding my desire and grief around this issue, but I believe that when we learn about our emotions, we begin to take our power back.

If you’re reading this and are unsure about your family’s decisions regarding having children, please hear me when I say that there is no right answer. We all have to decide what’s best for us and remember the unlimited ways there are to be a mother figure. In addition to co-parenting my partner’s children, I am affectionately “Auntie Claire” to dozens of my friends’ kids. These are titles whose meanings I cherish. The world needs more official and unofficial moms.

Living with acute hepatic porphyria, our realities look different than those of just about anyone else we know. So why do we keep comparing our life milestones and feeling robbed? We are enough just the way we are.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.