We all ‘come out’ in our own ways, including PWS families

National Coming Out Day was observed Oct. 11, marking the anniversary of the 1987 National March on Washington for Lesbian and Gay Rights. The day encourages LGBTQ+ people to live openly and authentically, builds solidarity between the community and its allies, and highlights how much personal stories do to build understanding.

As someone who identifies with the community, I take a few moments each year on this day to reflect. I usually think about how far we’ve come and the privileges we have today because of the advocacy and resilience of the generations before us. I also think about how, even though my husband, Jamie, and I are both proudly out, gay men raising two beautiful children, we keep “coming out” in our day-to-day lives: to new co-workers, medical providers, school administrators, etc. Every time a form asks for “Mother’s Name” and “Father’s Name,” we come out again.

Since adopting our daughter, Emerson, four years ago and welcoming our son, Ellis, earlier this year, I’ve been reflecting on their experience, too. While navigating their Prader-Willi syndrome (PWS) diagnoses, I’ve realized that they will spend their lives “coming out” as well.

PWS has nothing to do with sexual orientation, and I’m not saying the two “coming out” experiences are the same. But there are similarities to the pattern.

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Navigating for them, for now

Right now, Jamie and I are their navigators. We explain to family, friends, and neighbors why we bring the kids their own snacks to a birthday party or separate dishes to Thanksgiving dinner. We sit down with their schools to talk about development, Individualized Family Service Plans, and Individualized Education Programs. When chatting with our managers at work, we’re often explaining why we may need to take an hour or two in the morning for a therapy appointment.

It can also look like telling a new dentist that people with PWS have different oral health needs or like our recent experience of explaining their condition to an unfamiliar hospital when Ellis came down with hand, foot and mouth disease while we were out of town.

Covering: Turning down the volume

I recently attended the Out & Equal Workplace Summit, where I had the opportunity to hear Kenji Yoshino speak about the concept of “covering. The Chief Justice Earl Warren Professor of Constitutional Law at New York University School of Law and director of the Meltzer Center for Diversity, Inclusion, and Belonging, Yoshino has written about it as an identity that is “neither altered nor hidden, but is downplayed.” You’re still who you are. You just make it easy for everyone else to overlook it.

I feel the pull of that in our world, too. It’s the temptation to say “they’re fine” when a conversation is running long, or to skip the snack explanation because it’s easier than being the family that makes things awkward or difficult. People mean well when they tell us our kids “look so normal.” But we don’t want Emerson and Ellis to learn that their needs are something to downplay or stifle for other people’s comfort.

We’re raising them to live fully and authentically. They are who they are, they should be celebrated for it, and their needs happen to look different from other kids’. I think we’re all “coming out” in some way. While details may vary, most of us have weighed whether to share something with a new boss, a new friend, or a new neighbor.

Why our stories matter

While there’s been real progress through laws, regulations, and community groups, rules don’t create belonging. The National Institutes of Health estimates that 25 to 30 million Americans are affected by rare diseases. That’s a lot of people explaining themselves. Which is why sharing our stories matters, whether we’re living with a rare disease or caring for someone who is. National Coming Out Day exists because people telling their stories changed how others understood them. The same holds for us and our kids. When a teacher, a co-worker, or a neighbor has already heard what life with PWS looks like, it builds a bridge of understanding and empathy for the next kiddo or family navigating PWS or another rare disease.

For now, we’re the ones navigating their repetitive “coming out” situations and telling their stories. Someday it will be theirs to navigate and share, in their own way and on their own timeline. What helps us most is when someone hears about a need that looks a little different and asks us questions before making assumptions. My biggest hope is that the people they share their stories with meet them with curiosity.

Also, if you design forms, “Parent/Guardian” is universal and works great for us.

Note: Prader-Willi Syndrome 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 Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.