Little Hobbit, Big Privacy

Why we keep our child's diagnosis private

As the two parents in a family of three we share everything that comes with being a family: love, chaos, pride, worry, and a deep hope for our little hobbit’s gloriously happy future.

Like every human, our child is unique in many ways. One of those is a rare medical condition. While it is something they carry with them for life, it doesn't define them. What does define them is that they're funny, curious, kind and stubborn in all those ways a little human can be. With these qualities, we slowly see them grow into a beautiful human being :)

One of the biggest decisions we have made is to keep the name of the condition private for now. We want to be very clear: there is no shame attached to this condition or the symptoms. None. We are not hiding it out of embarrassment or fear of judgment about the diagnosis. Instead, our decision comes solely from two very deliberate and hopefully thoughtful reasons.

Ownership and autonomy

First, it is about ownership and choice. This is ultimately our child's story, not ours. A life-long medical diagnosis is incredibly personal. One day our child will have their own voice, their own preferences, and their own boundaries. They may choose to share their diagnosis widely, or to keep it private. They might also decide to share symptoms but not the named condition. There's many options and while we can help, we think the final choice belongs to them.

By limiting how widely this information spreads now, we are trying to preserve their ability to make that choice for themselves at a later time. Privacy, in this sense, is not secrecy: it is respect and empowerment for the teenager of a decade from now, maybe even the parent three decades from now.

Fear and misinformation

Second, and equally important but maybe more pragmatic: we live in a world where not everyone responds to difference with curiosity or compassion. Most people are kind, supportive, and open-minded. We have experienced that kindness in the people closest to us, and we are thankful for it. But it's an unfortunate truth that within any community, there is always a small group who react to the unfamiliar with fear, misinformation, or even exclusion.

Our child's condition is not contagious, not impacting others, and not something that should in any way limit friendships or opportunities. However, misinformation spreads quickly within our world of casual online "research" and fact-free social media.

We have heard from other families raising children with rare conditions that, while uncommon, it is a very real risk for rumours or misunderstandings to lead to social isolation. Sometimes it's another parent quietly deciding the children should not play together. Other times it's gossip spread to other parents (and even children), that reshapes how a child is treated before anyone takes the time to get to know them.

As rather resilient adults we can deal perfectly well with uncomfortable conversations, intrusive questions, or misplaced opinions. For a child just learning to hold a pretend play tea party with their dog that is different though. We simply want to shield our child from being reduced to a label before they have the chance to be known as the actual person they are.

Footnote: context is everything

This is our decision, made within our context. The two of us understand not every parent comes to the same decision we did. And we also understand how one can formulate very similar arguments about kindness, support, and open-mindedness to arrive at the opposite conclusion: to openly share the diagnosis with the proverbial village helping to raise them.

As sharing is pretty much a one-way street, for now we think our decision is the correct one for our child and our context. Protecting their privacy now is to protect their freedom of choice in the future. It might be that when our hobbit develops further we will rethink or fine-tune our choice. Reality isn't static and neither are our choices. In that context we want to be clear that we also remain open to respectful conversation with others about this.

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