Meet Janice S. – Canada

It’s an emotional subject for me, mostly because of the past, not so much the present. For me, there has been a lot of shame associated with the inconveniences of ichthyosis, and sharing about it was never comfortable-it almost highlighted the shame even more. I think I used to be scared that talking about it would make my fears truer. I have found that sharing some of my experiences with honesty and vulnerability has actually helped take some of the sting out of them.

There are so many worse afflictions, more severe circumstances than my own, even within the world of ichthyosis, that it almost seems selfish and petty to tell my story. And then I think of the younger me, and those who are now at that place, and I guess I feel compelled to share, not to gather sympathy for my past struggles, but to offer understanding and encouragement for those closer to the start of the journey. If pieces of my past resonate with someone else and help them feel less alone in their struggles, then sharing is worth it.

My overarching message about living (almost) 50 years with ichthyosis would be this: it doesn’t go away, but it does get easier. As I contemplate my childhood and early adult years, things surface that cause some twinging and cringing. Things that no longer impact today’s Me (or at least, rarely), but sure were hard then!

Like, the year we lived in Ontario when I was eight. It was the first experience of trick-or-treating in an urban environment. I had the best costume. It was one my Mom had made me. It was a white angel robe with gold rick-rack around the hems, and complete with a sparkly halo. I felt, well, angelic in it! So, off I went, feeling so excited in my very special costume- until one of the door-answering adults asked about “the make up job to make [my] face look that way.”

Humiliating experiences can occasionally still happen, but they do get easier. I remember my very first sleepover, where the parent was a little put out that I was getting into bed with dirty feet. (My skin has varying color shades, and well, the color of dirt is one of them). So much for the excitement of my first sleepover. Misunderstanding can still happen, but it does get easier.

There was the time in grade 5 where one of the popular boys, who was usually pretty nice, called me “red-eyes” in front of the other kids. I was usually fairly resilient, but this time I put my head down on my desk and sobbed my heart out. I was too ashamed by the complete truth of what he said to tell the teacher why I was upset. Shame can still creep in, but it does get easier.

Graduating college and looking ahead to starting a career caused a lot of anxiety. Will people be ok with me touching them? Will they think I’m contagious? Should I explain my condition to each new person or completely avoid the obvious?

Decisions and circumstances that impact others still exist, but it does get easier.

The most well-meaning, and yet most negatively impactful, may very well have been the fatherly gentleman who really wanted to help me find a cure “so that some nice young man would want to marry [me].” Unfortunately, that came at a time when I already believed the lie that without external beauty one had nothing to offer. That kind of stung. Well, I never did find a cure, or a husband, but, against that person’s speculation, ichthyosis has not been the deciding factor on that!

Living in a society that places so much emphasis on the outward doesn’t go away, but it does get easier.
To those coming along behind, I’m happy to report that: I get dressed up now and get genuine compliments; name-calling is pretty much non-existent; my people understand and accept the various aspects of my condition; I have a thriving career with the best clients ever; and yes, even men have shown interest despite the imperfect external (it must be the sarcasm they like ).

My message to the younger me, and those like her: Keep going, keep reaching, keep showing up for life despite the challenges. There will always be hard moments, but life with ichthyosis does get easier. Have the courage to keep pushing through it. Don’t let ichthyosis stop you. Life with ichthyosis can be very GOOD!