Today is nation PKU awareness day. If you don’t know what that is. It is a metabolic disorder in which the body can’t digest phe which is in protien. I was born with this disorder 18 years ago next Wednesday. And I will continue to live with this till they hopefully find a cure.
I pick at my skin, I pull at my face and I scratch at my head. It leaves blood, scabs and scars. I can’t have my fringe away from my face because of the amount of scars on my forehead. Some people will point out the wounds on my thumb and ask what happened, when I explain they say ‘just stop’. If I could stop I wouldn’t do it. But I can’t because it’s not a bad habit. It’s a disorder.
Back in the middle school and early high school I used to let my hair grow out to my shoulders so I could hide my ears, neck and face from plain sight. I wore long sleeves and pants in 100+ degree weather just so people wouldn’t see the red scaliness that covered nearly 30-40% of my body.
Honestly psoriasis greatly influenced who I am today. A lot of good ways and actually not so much bad. But that’s not why I’m writing this. I was looking at myself after finishing a treatment regimen and realized something I’ve done pretty much a few times every week for the last 10 years. I make my hair into crazy shapes with the oils and medications I use at night. It’s just something I’ve always done, no one sees it but I do it. I just noticed all of a sudden and found it to be humorous as all hell.
It’s just that when I see people, kids and adults, with moderate-severe psoriasis and I feel for them. I’ve been there, it’s rough knowing the first thing people are going to notice about you is that red scaly patch near your face or spreading down your arms. It seems like a lost cause for so many years, so I stopped seeking treatment and it wasn’t until I learned some self-worth before I really learned how to control it. It’s honestly hard knowing that people judge others for the skin they wear.
Oh well, the awkward chapter has long passed. No one really has to see my psoriasis anymore but it’s still a huge part of who I am. For those people that feel like “Oh it’s not a REAL problem” because it’s not typically life-threatening, that is complete and total bullshit. Everyone’s health problems are serious ones and deserve to be treated as such. There are health risks involved with psoriasis but that’s beside the point. Everyone’s problems are real problems, regardless of how severe they are. Grow a conscious and show a little compassion.