I think one of the reasons that Stephanie’s post from yesterday in our harlequin ichthyosis series has resonated so strongly with many of our readers is because it really shows how even the most severe forms of ichthyosis don’t have to get in the way of the really important things in life.
For parents who are faced with a newborn baby diagnosed with severe ichthyosis, it’s only natural that they might fear that their child will be forever burdened by her skin. And seeing the significant amount of care that’s necessary, and the illnesses and injuries that come along, it’s only natural that a parent might fear that this is too big a burden to bear. I think my parents faced a lot of that as I was growing up.
And so I think that one of the biggest benefits of connecting affected adults with affected children and their parents – connections that happen at conferences put on by FIRST, the Foundation for Ichthyosis and Related Skin Types, and also through online communities – one of the biggest benefits is letting the parents see that, on the whole, “we” adults have come out ok. Sifting through the list of affected adults we know, we can count lawyers and bankers and salespeople and athletes and other folks from all walks of life.
That message is really important to get through to the new parents, I think. While our skin certainly shapes our lives, it doesn’t define our lives.
At a presentation Jennifer and I gave a couple of weeks ago at GeneDX, a company that specializes in genetic testing for rare hereditary disorders (we’ll talk about that presentation soon, honest!), I told the audience that I felt fortunate, because while my own ichthyosis is severe enough to limit a lot of what I do, it isn’t immediately obvious from looking at me that I’m affected. But on the other hand, someone looking closely at my hands or neck could certainly observe something. And the minute you touch my hands, it’s obvious.
Growing up, I went through life dreading situations which forced me to shake hands. Growing up in the Catholic Church, I would especially dread the “sign of peace” towards the end of Sunday Mass, during which you shake the hands of people around you. And when you shake someone’s hand and they react with surprise at what they feel, or if they jerk their own hand back in surprise or shock, that’s not a good feeling.
(As an adult, in professional contexts, handshaking comes with slightly different hazards for me now. It’s not so much an emotionally taxing ritual, but is rather a fear of discomfort if I encounter someone who feels compelled to deliver a bone-crushing handshake. But I digress.)
So a lot of my time as a child and a teenager was spent being afraid of the reaction of people who intentionally or inadvertently touched my hands. And I see the same problems with the boys, whose classmates don’t want to hold their hands during story time or during games. Two weeks ago, Hunter wrote about some of her classmates not wanting to handle props she had touched, and that story resonates strongly with my experiences, too.
Hunter also wrote about her own difficulties in dating in high school, and I can’t say I shared those – because I never did any dating in high school. I think the unwitting lesson I wound up learning from feeling people flinch away from my handshake, or from classmates going out of their way to avoid touching my hands in any fashion, was that people didn’t like touching me. And as the lonely teenager who learned those lessons, I often wondered what my future would hold in terms of love and life in the future.
In a way, I think the sharing of our collective adult experiences here (and elsewhere) is something like our own “It Gets Better” project for the ichthyosis community. Because during the summer after I graduated from high school, I met someone who was able to go beyond “hey, your hands feel different than mine”. And after discovering that we had lots in common despite the differences in our skin, we’ve stuck together for almost 20 years now.
So yesterday, Steph shared with our readers here her experience of how she hasn’t let her harlequin ichthyosis get in the way of love and marriage. And perhaps that sort of story is obvious in-person at a FIRST conference, where people are milling about and sharing things in-person. But online it’s not necessarily as obvious, especially when some of the most dominant voices and narratives are about infant care and childhood bullying.
To the kids and the teens and the parents out there who might be reading this: For so many different reasons, don’t be defined by your skin. Your skin might not get better, but life will.
(I was originally going to post an older version of this blog entry on Valentine’s Day, but, alas, life and work interfered. I still think it’s timely!)