Sharing my story for Rare Disease Day

“There are many symptoms associated with PC, but I just want to touch on two aspects, invisible and unpredictable. There are many disabilities and disorders that are considered ‘invisible’, that doesn’t make them any easier to live with. I live with pain every day and managing that pain dictates many of the choices I make. Walking on uneven ground, standing for long periods, and working in heat and humidity make managing my disease harder. Living with pachyonychia is also unpredictable, sometimes I can walk/run/dance/ski/hike/swim (insert any activity here) without limitations, but at other times I cannot participate at all. It is emotionally exhausting living with a disease that changes everyday and that is hard to understand or explain to others.

There are many ‘invisibly’ disabilities. When you see someone who does not look like they need accessibility or accommodation, are we as a community being respectful and striving to understand. It is common to be put on the spot asked to explain why I ‘get to’ park in accessible parking, or why I have to be ‘so careful’ in what I participate in. In those instances, it is very hard to explain in a meaningful way that educates others. There are really only a few options for anyone put in that position, downplay, give out personal details, or shut down the conversation. Most of the time I feel comfortable advocating and educating, but some days I don’t have the capacity to do that.

So, in the spirit of creating awareness and honoring those who have to struggle everyday with a rare disease, let’s freely offer compassion to others, even before knowing their story. It is also very important to create an environment where we all feel comfortable sharing our stories with each other. I want to challenge everyone with a quote from an essay I read recently.“

Spend your life believing that each individual person has probably suffered more than they ever should have and then refrain from adding your judgment to their burden.”