Coping Through Journaling: What Is Psoriasis to Me?

For quite some time, I have been trying to journal for physical and mental healing. When I make time, I do great and find myself releasing thoughts and opinions I didn't know I had. Unfortunately, most of the time I can't seem to get it done. I find it difficult to make the time.

How I use journaling to cope with my psoriasis

More recently I have been trying journaling prompts, and this unleashed wildfire. My whole response was psoriasis-related. I thought I would share it here in case it can help you.

The prompt is: "I know _____, I don't know _____." Simple right? Here are my responses.

I know psoriasis defines me but it shouldn't

One of my core beliefs is that I am more than my psoriasis. So when this was the first thought in my mind, I was quite horrified. The thing is, last month I met a group of fellow psoriasis bloggers and we all confessed one thing. That without our psoriasis- something doesn't feel right. We have all had psoriasis for so long that we have accepted it is part of who we are. When it's gone, we enjoy it - but it doesn't feel right. It's not an honest representation of who we are.

On reflection, it would be difficult for me to separate psoriasis from who I am. I was diagnosed at the age of 5, and so I don't know life without it. It's shaped all of my critical life choices; the decisions to specialize in Human Biology at University; to complete a Master's degree in Genetics and Immune System modification; to give up a highly demanding job so I can integrate more self-care into my days and allow myself to modify my workflow when I am flaring.

Would this interest in human physiology be in me if I didn't have psoriasis? How would I ever know? Perhaps, in this case, psoriasis doesn't define me, but it has shaped the choices I have made, the choices that have influenced who I have become. I still think I would have ended up working from home eventually - after all; psoriasis didn't make me an introvert (as far as we know!).

I know that psoriasis means more to me than anyone else

I think about my psoriasis more than anyone else. Fact. Most of the time, no one even notices. Not my friends, not my family, not strangers in the street. My husband doesn't even recognize pictures I have taken of my skin during flares - he tells me “it's not what I notice when I look at you”.

Yet it is the second thing I notice when I look in the mirror. At the moment I'm in the third trimester of pregnancy, and the bags under my eyes recently overtook my first look flake assessment in the morning. I expect facial psoriasis will be back at number one postpartum. This means I have a distorted view of how bad my psoriasis is.

I know that no one else understands unless they have lived it themselves

People try to empathize with my struggles. It's the endlessness sometimes that gets me down. Someone who has an allergic rash for a week or who has a small patch of eczema on their forearm. It doesn't mean they understand the emotionally draining burden of having psoriasis in the ear canal or having the skin crack between the butt cheeks every time they get out of the bath.

Knowing this makes my decision to keep blogging and keep podcasting about psoriasis so much easier. I need to stay connected with my people. We get each other's struggle and just knowing that makes me feel safer.

I don't know how old I was when this all started

Most of my life, I thought I developed psoriasis at the age of six when I came down with chickenpox. Earlier this year, I bravely approached the topic with my parents and discovered that they noticed plaques before my diagnosis of chickenpox. She believes I was maybe five when first showing symptoms, but isn't quite sure. They didn't want to accept it was psoriasis even though my mom has the condition and could recognize the signs.

I don't know what happened to me when I lived in the hospital

My parent's denial had to end when I had a mega flare post chickenpox. My body was covered so severely I was admitted into the hospital for several weeks. Though my mom talks about how hard it was to leave a six-year-old in the hospital, I remember being upset that for the first week I had to stay in a ward with boys (they didn't space on the girl's ward). When I finally did transfer over, the girl next to me also had severe Psoriasis. Only hers didn't look like mine. I now know she had a guttate flare, whereas mine was plaque.

I have very few memories, other than the smell of coal tar. What happened to me there? What treatments did I have? How long did I need to stay?

I don't know if my children will get this

I didn't know whether I should have children. Now by the time the New Year rolls in, I will have four. The good news is that since I was a child, we know so much more about the genetics behind psoriasis, and the hereditary component is so much less than we thought it was.

This means that I am raising my kids to the best of my ability to manage their environmental triggers. To be aware of their emotional well being and to tune into their body's cues. I will have internal conversations in the hope that they can manage their environments enough to stave off the triggers that psoriasis requires to activate.

Only time will tell. I often fall back on the thought that I would rather be here with psoriasis, then not be here at all. I sincerely hope my children will never need to consider this, but it would be naive to think they wouldn't.

I don't know if psoriasis will lead me to an earlier death or help me live longer

There is no question that psoriasis has driven me to make healthier choices. At university, I didn't drink as excessively as my fellow students for fear of flaring and I have always felt better eating whole foods and a vegetable-rich diet. All things that help prolong life - theoretically.

Then there are the repeated light treatments and the uneducated application of vegetable oil to my skin when we had run out of bronzing oil during my childhood summers. There were also the systemic drugs partnered with the stress and lack of sleep along combined with the myriad of other unhealthy behaviors that I seem to embrace when I am feeling down. These things that promote cancer, for example.

How journaling brings perspective

Only time will tell. As I get older, my diet improves and my self-care priorities shift. I know I am doing more and more to support my body and health. There are some things we can do when we know we have these thoughts. For example, I can use the freedom of information act to obtain my medical records to untangle my early year's medical history. There are some things we can't do (like time travel back and apply SPF 50).

What I do know for sure is that writing or thoughts can help untangle the frustration into a plan that can more easily be addressed so we can make progress with our physical and emotional healing and that is a winner in my book.