Who Can I Relate To?
I think a lot of times we can accept things better when we can relate to them. When I was first got the diagnosis that I had psoriasis, I felt very strange. Nobody in my home or school had it. There was no one my age that I knew who had it. For me, I felt absolutely more afraid that there was no one I could relate to.
How do you accept having something all over your body and your family telling you it is ok? I can’t explain what this does to a young girl to be different. We can look at our youth in 2017 and imagine for a moment telling them they have psoriasis - remember I was diagnosed in 1963. In today’s world young adults can connect to social media and talk with someone about what they are going though. I had no Internet, no Facebook, no Twitter or Instagram. I had no type of outside connection. I felt very different because I was in a world at that time facing this alone.
Hiding my psoriasis
Sure, there were others who had this disease, but I didn’t have a clue as to who they were. I knew in my house; neither my sisters nor my parents had it. I would look at them and only think of what it would be like to have clear skin and be pain-free. I have dealt with pain and itching since the age of 5. I didn’t know any other children to talk to about how I felt, what I was going through and the pain I was having. You’ll sometimes hide it because most people won’t know how to deal with it. They’ll want to help, to make you feel better, but you know they can’t.
Standing out a little too much
In one way I felt special because I was always getting attention. I was always going to the doctor, getting special creams and lotions, but in another way, I felt so disconnected. I always felt that one day I would have the opportunity to share and be able to articulate to the world how different I felt.
I’ve always felt that I had to be an overachiever to compensate for my feelings of being different. I would do everything growing up twice as good to make myself shine. I felt if I stood out this would minimize that feeling that was instilled in my youthful brain; telling me I was different.
I think what really hit home for me growing up was how people responded to me. If I wanted to get water, it was poured for me. If I wanted a slice of cake, it was cut for me. It took me years to realize that these people weren’t being nice to me, they didn’t want me touching anything.
Connecting to others
Even in today’s world, society doesn’t know how to accept someone different from them. I remember sitting in school and being the only one with gloves on - talk about feeling different. I know why I had them on because my hands were cracking and bleeding. My parents didn’t want me to scratch my legs, arms or scalp. The gloves were basically a deterrent for me not to scratch until I could heal. Of course, if you're the only one with gloves on in a classroom, someone is bound to ask, “Why do you have those gloves on?” This is what children do; ask questions as they are curious. Being different even today is something I still deal with.
I am still an overachiever; not because I am trying to prove anything, but I know what it feels like to feel different and want to share my story with others. I will never be the person I was before. I am stronger, more compassionate and more tolerant toward others. I have learned to be appreciative and be happier. I work, shop, eat and try to enjoy life. I am connected by the great world of social media and am able to connect with like-minded people who share my feelings about psoriasis.
Times and people have changed over the past 50 years. I know I am not alone in this journey. I still have days where I feel overwhelmed, but I am not alone. I will never give up the fight to one day help find a cure for psoriasis and psoriatic arthritis.
How often do you experience brain fog?