It's Not That Bad (But That's a Lie)
Last updated: March 2019
Have you ever felt guilty complaining about your psoriasis in public?
I got funny ideas in my head growing up that psoriasis isn’t that bad. I think people thought they were being really helpful when they gave a positive shrug and said ‘it could be worse!’ with an optimistic smirk across their face; they couldn’t quite manage an authentic smile, looking down at a child covered in itchy spots with bald patches and swollen joints.
I grew up with psoriasis everywhere, and it was normal. People would ask what was wrong with my skin and I would tell them it was ‘just’ psoriasis and that it was totally fine, so the conversation didn’t linger on me too long and we move swiftly away from my least favorite topic.
Like most lies, if we tell them often enough, we begin to believe them. Until we are forced not to accept them anymore when the truth hits us in the face, and we have no choice but to wade through it.
I'm a veteran of psoriasis
This happened to me five years ago. At this point, I have lived with plaque psoriasis for over 20 years, so I considered myself a veteran. A veteran of psoriasis and veteran of positivity. Nothing I didn’t know! Then I got my first real strep infection. The word strep infection had been banded around a lot as a child, usually the excuse given to explain why my psoriasis would suddenly worsen but that indeed wasn’t what happened when I was a child- because the real strep infection destroyed my life. I just about weathered the first strep infection. Then precisely 12 months later a second strep infection scrumpled up my life like a piece of waste paper- and then tore it into tiny shreds that would take me over a year to glue back together. I acquired guttate psoriasis which frustratingly behaved very differently to my plaque psoriasis and had different treatment preferences. One of the drugs I was given gave me insomnia, and my life unraveled and paved the foundations for what would later become depression.
Unhealthy coping strategies
I have since reflected on my childhood years with psoriasis, and I realize that I developed unhealthy coping strategies from the age of 6 years old. Standing in my dermatologist's office, I remember the doctor leaning down to me, with the smell of cigars lingering in the air as he told me that I needed to avoid stress. I am unsure how he expected me to do this at the age of 6, I assume it was one of the odd things we do as adults where we make a statement to a child that is intended for a grown up. He was looking at me, so I decided that I could no longer feel stressed or it would make things worse.
Like most 6-year-olds- my stress coping strategies were rather primitive, and as I deemed crying and having a tantrum as a stressful event, I decided the best thing would be to bury that emotion and not feel it, then it couldn’t affect my skin. We all know as adults how healthy repressing emotions is *note heavily sarcastic the of voice.*
Many of us are guilty of hiding our emotions though? How many of us are expected to have the strategies we need when someone tells you to reduce your stress- like its as easy as changing your brand of butter or having a lemonade instead of a coke.
Hiding our emotions is another form of hiding the truth.
Changing the record
So now I am different. When someone asks me how my skin is I tell them the truth. I have started talking publicly at networking events; when people ask me what I do, I say them about my podcast and why it is so important. This usually includes talking about the co-morbidities and mental health aspects associated with living with psoriasis. A lot of people are not interested, but particularly those who know of psoriasis, come up to me afterwards and talk about how little they knew. That their impression was that it was just a skin disease.
Of course, that is what they think. That is what I have told everyone I met since I was a child. This is why we need to try to be more honest. As a community, the more people who talk the truth, the easier it is for those who are afraid. If more people in society knew what psoriasis is, there would be less stigma.
Mental health and psoriasis
Much to the displeasure of my husband, I frequently drop in the word depression when I am talking about what I have been up to recently. Not in an obtuse way- but in a way that if someone wanted, they could pick up on it and use it to propagate a conversation about mental health.
“I baked a treacle tart last week! I am really excited because I haven’t baked a tart since I started my recovery from depression, oh and I made homemade custard- it was much easier than I expected.”
The thing is- almost every person I did this with has opened up and confessed that at some point in their life they have experienced depression too.
Opening up to others
My husband is warming to it too- as he realizes how many people have shared my/our experiences and are not judging me negatively. I have found the opposite- people opening up, embracing me and quite appropriately telling me I am brave. Because talking openly about stigmatizing health problems is hard.
I don't want everyone with psoriasis to suddenly start telling everyone how hard it is, but tell your closest friends. When your closest friends really understand they will love you more. They will also know on a deeper level when you cancel your coffee date because your skin is flaring, or you ask for them to cover for you at the kids bake-sale.
You are beautiful exactly as you are. You are so much more than your psoriasis, don’t you forget that. Your friends know that too- so practice trusting them and then let me know how you get on :-)
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