One of the sum.

Lately I feel like a homebody. What’s that word for someone who doesn’t go outside? Agoraphobia. Now that I just googled it, sadly it seems to fit me. It’s always amazing that nothing is unique. Just lots of people dealing with similar circumstances. We are all just trying to survive. A sum of the whole. Tons of little things or events shape the way we are. How we react to situations and how we choose to live our collective life. I’m here to tell you about one of my things. Something that shaped me, in hopes of you understanding me slightly better.

What I’m talking about is psoriasis. Google it if you want, but basically “A condition in which skin cells build up and form scales and itchy, dry patches,” and it affects 2%–4% of the human population. In history it has been called leprosy wrongly, but back then they didn’t know better. I’m just going to quote the Wikipedia page on it. “Individuals with psoriasis may feel self-conscious about their appearance and have a poor self-image that stems from fear of public rejection and psychosexual concerns. Psoriasis has been associated with low self-esteem and

depression

is more common among those with the condition.

[4]

People with psoriasis often feel prejudiced against due to the commonly held incorrect belief that psoriasis is contagious.

[44]

Psychological distress can lead to significant

depression

and

social isolation

; a high rate of

thoughts about suicide

has been associated with psoriasis.”

Ok, so now that you slightly know about it, let me tell you my experience. I think it was around puberty that I noticed something strange on my scalp. So I’m thinking 13–14 years old. It started as just a small spot but over time spread. For much of my youth it only ever existed on my scalp. It slowly moved down to my forehead though. That’s why, if you look at photos of me in my youth, I had long bangs that came down to my eyebrows that I kept neatly brushed forward to hide my forehead. It was something that was always on my mind. If someone could see it, what would they think?

It is constantly itchy, and being on my scalp I often end up scratching or running my hands through my hair. Trying anything I can to calm it slightly so I can live for one second without the constant alarms of itch in my mind. I remember having a cold or something and going to see a doctor. I had to have been 15 or 16 years old. I figured this was my time to have a professional look at it. I remember so vividly her saying, “Hmm, I have never seen this before…” Great. Super cool. She prescribed me a bottle of shampoo that cost my mom like 60 dollars. It did nothing.

The thing about psoriasis is that it moves around. Eventually it left my forehead. Moved to the sides of my scalp. To my elbows and to random other spots on my body. It’s a constant cause of concern to me. I have tried so many different things to try to calm it or heal it. Yes, most likely what you are thinking to tell me to try right now, I have tried. My next step is to get a UVB lamp and try light therapy. It’s not going to cure it and I will have to do it for the rest of my life, but it beats some of the medications they will put you on.

I wonder what my life would be like — no, what I would be like — if I never had psoriasis. Would I be less afraid of what people think of me? More confident, more mental power to put to other things? I know it has affected me negatively. How deeply it affects me? I’m not sure. Can I blame my depression and anxiety on it? I do, for parts of it. As I said at the beginning though, we are a sum of the whole. What ifs never do any good. I am what I will be and I have accepted that.

I’m writing this now mostly because at the moment it has moved to my ears and neck. Encroaching on my face. The things you can’t do with psoriasis is cause friction or cuts to happen. It will only cause it to spread faster. So at the moment I have chosen to grow a beard. In theory it will protect me from it spreading to my face. In practice it is also helping to hide the bit that already has gotten to my face.

Obviously with my agoraphobic nature currently, it has not been much of an issue. I only see a few people and they understand what’s happening. At work no one even bats an eye, as beards are quite common currently. The thing I struggle with currently is going places where I know the people but they don’t know what is going on with me. I wish I could live in a world where people just knew what was up. I’m hoping this blog post informs. In reality though, not many people read this.

So soon, I am going to be trying to expand the boundaries that I have set so small currently. I will be seeing a doctor soon and getting treatment for my depression and anxiety, hopefully. I wish to return to the world a slightly whole person. So if you see me and my beard: I’m ok… or well, I’m as ok as I can be. Please don’t tell me about what will cure my incurable genetic autoimmune disease.

I just want a nice conversation about positive things.

That’s all. I think that’s all any of us wants.

If you have made it this far, thank you so much for reading. I appreciate the interest you are showing in me.

-Tom