Finding Community in Rare Disease
Good news! I am not that unique!
You might not think that sounds like good news, but when you grow up thinking you are utterly alone in your freakishness, there is something really comforting in finding out you were wrong.
To be fair, intellectually I knew I wasn’t the only one in the world with Poland Syndrome. But until 2020, I had never met anyone else in MY world with it.
But let me backup for a moment…
I’ve been a teacher of babies and toddlers for more than a decade. And the question I have been most often asked by parents is some variation of “is it normal…?”
Is this ok… Do you think I should be worried about… My child does___, do other children do that?
And not once has a parent been hoping I would say, “Wow! That is unique! I’ve never seen that before!” That would not be a comforting answer to a parent trying to figure out if their kid is okay. As parents, we can all see the wonderfully unique gifts our children have. We don’t need reassurances that our children are special. But sometimes, we do need reassurances that they are “normal”.
Another child has gone through this. Another parent has dealt with this too. They are not that unique. And that is all the parent needs to hear to feel less scared. We take comfort in our children being like everyone (or someone) else even as we celebrate and encourage them to be different.
This human need to feel “normal”, can be isolating in the Rare Disease community. When you live with a condition that makes you feel totally and utterly different, it can be isolating at best and shame inducing at worst. Which is why it is so wonderful when you are able to meet someone who can say, you are not that unique; I know how you feel because I feel it too.
Now back to 2020, at 46 years old, I wasn’t looking for anyone with Poland Syndrome. With my reconstructive surgery done in 1993, and all my emotional baggage from living with a birth defect long since worked through (for the most part!), I didn’t need help with my condition.
But I was looking for community. I had only moved to the U.K. a few years earlier and was still finding my place. So starting up a new business teaching baby classes late in 2019, I wrote a blog post to reassure new mums that they were not alone in their worries of inadequacy. I drew on my experiences breast feeding with Poland Syndrome as an illustration.
And then a miraculous thing happened. PIP-UK found my post and shared it. And I discovered there was a charity set up to support people and their families living with Poland Syndrome, the very condition I grew up feeling so alone with, in Manchester, the VERY city I had recently moved to! What were the odds!?
Long story short, in 2020 when the world was locked down, a whole new community was opened up to me. I participated virtually in a family day and met people with Poland Syndrome from across the world. And with each story I heard, I felt more understood and a little less unique.
Now I am serving as the Chair of the Trustees for PIP-UK. And I am honoured and humbled to be able to help an organization whose main purpose is to help others know they are not alone.
And as an added bonus, I have made friends in my new home town through this volunteer work with PIP-UK, giving me a new community to belong to in these weird times of forced isolation, connected by the very condition that made me feel so alone at times as a child. The world is a wondrous place.
There is community to be found. You and I are not that unique. Good news indeed!