I posted for the first time on social media about leprosy yesterday, and I deleted it after a few hours. Just like I deleted the title the first time I wrote about it here on substack. Is it the word “leprosy”, the gut-punch that it is? What if I told this story entirely as “Hansen’s disease”. Would it matter? I assume that most people, feeling the gravity of my tone, would google it and in 2 seconds it would be linked with leprosy and then it’s all the same.
And it IS leprosy. It’s interesting that The International Leprosy Association and The Leprosy Mission still use the term. And here in Indonesia it is only “kusta”, there is no milder term. In some countries it is officially renamed Hansen’s disease and all their webpages refer to it as such. Is that effective in removing stigma? I bet someone has done research on that. As I share, though, it is to process what we are going through, and what we are going through is with the fears and history related to leprosy. So, when I draft a post using “Hansen’s disease” it doesn’t feel accurate to what I’m processing. But when I draft a post using “leprosy”, it feels like throwing a grenade on my feed or walking out half naked.
It still feels really vulnerable to talk about. And actually it’s not because I am worried about stigma against Elly. More because it makes me feel so different, so other, so crazy.
I’ve pretty much always been active on social media. I think I post for connection and feeling known. This has healthy and unhealthy sides, the healthier one is that people are great and connecting with people is what we are made to do. And so, since this is an enormous thing in my life that I’m right in the middle of processing, I want to write and post about it. But then in this case, with leprosy, posting about it feels like adding distance. It’s not like, oh look we both live unique cross-cultural lives or we both are homeschooling or we both have kids with a learning disability. I literally know no one else with this in the world, so there’s no finding commonality with this, except just as humans in a broken world. So, despite generally verging more on oversharing than privacy, I am finding it challenging to do so, to actually name it. I know I don’t have to share, but I want to. I want to be known. I just don’t know how to be known without this also making me seem so… different.
There is a doctor that a friend connected me with. He’s a well-respected leprosy expert and he has repeatedly answered my questions with detail, expertise, and such compassion. This week I emailed him two days in a row, and the second time I feared I would be bothering him, this random woman across the world worrying about her child when he’s a VP in a large organization. But, because there is literally no one really tracking my kid’s dangerous disease other than me, and I was really worried about her this week, I did email him again. And you know, he told me that when his daughter was my daughter’s age, he was working in a situation much like ours in a country in South Asia, and his daughter got a different rare infectious tropical disease. They had to travel back to the West to do a ton of tests for things that Western doctors have no expertise in but their home overseas had no capability to respond to.
His combination of actual answers to our actual need, compassion for the exact situation we find ourselves in, and his faith… well his email made me cry. He not only is helping me, but he always has this extremely unique empathy. What a gift. To be known and understood, both in the the disease and the situation we are in culturally, that is powerful.
It was also our first week of school. Which has been great. Looks at those sweet faces!