Worse than dealing with others is dealing with the pain

Living with PC is a lot harder than just dealing with the looks and comments people have. Of course, having others (even doctors) who do not understand PC and are trying to give you advice and ways to fix it as though they have the cure is frustrating. This is something that we have had all our lives and people want to tell me there is a cure without even knowing the name or understanding the nature of the disorder. But worse than dealing with others is the pain that we deal with on a day to day basis.

My father has a very bad case of PC, and also a even rarer disorder that is linked to PC called Steatocystoma Multiplex, or SM. Not only does my father deal with calluses and blisters on his feet, and even blisters under calluses, he has the added pain of cysts and boils on his whole body. I feel for him, as I have PC and SM too, but not nearly as bad as he does. He has shown me that despite people’s negative reactions to the cysts, the nails, the blisters on his feet, and the sores that never heal, he remains a humorous, kind, and loving person, and therefore is enough reason for me to be this same way.

I have blocked out the comments I get. I have a handicap parking permit that I use – especially recently since I started working again. Walking on my feet even just a few hours everyday causes me to have blisters and pain. I have a job now that is fairly easy on my body, but even having a part-time job where I’m on my feet can still make my condition worsen. So this handicap permit is very important for me to have. But I have gotten comments from passing people who think they know me and that I couldn’t possibly have a handicap since there is nothing obviously wrong with me in plain sight. This is the most frustrating part, feeling like you need to explain to someone your private, personal health issues just because they doubt you are being honest.

Five people in my family, including me, have PC and SM. SM is very painful, as I get sores under my arms and in my groin that open and close, but never really heal. It’s hard to wear underwear sometimes, and it’s embarrassing to have to raise your arms for something and people to see the sores there too. I had a cyst on my tailbone that had to be taken out, because it wouldn’t heal and would leak, I couldn’t even lie on my back to sleep or do yoga without it releasing fluid. But that was a rare exception, to be able to have it taken out. Usually, these sores are in areas that are pretty difficult to do surgery. When I finally decide to have a part of my body excised, it’s a long process to heal, and sometimes it’s just not worth the trouble, and sometimes it doesn’t even help at all! There is no cure, no relief for me and my family. Its true, we don’t die from PC or SM, but the quality of our life is affected in ways that many people do not understand. I want to have kids someday, but I’m not sure how to do it. I don’t want my children to have PC or SM. Maybe it’s too late for me, but surely there’s got to be something that can be done for the unborn. Maybe that’s where we start: to help future children. But it would be nice to find some relief for those who are already suffering too.

If you want to help PC and SM sufferers, please donate to our cause. If you want to do research on this rare disorder, please get involved. We need all the help we can get to figure out a cure for everyone affected.