How World Psoriasis Day Changed My Life

I had depression. I did not know it then, but I know it's now.

During my last flare, I had decided to start a blog. What else would someone do when they couldn't sleep? I had decided to spend the additional time I had acquired in the day as a result of Prednisone induced insomnia, learning about psoriasis (I was diagnosed pre-internet and so had not really used it for such a task before).

The world wide web of information

Needless to say, as someone with a degree in Human Biology and some common sense I was horrified at some of the information I found online, some of the advice people where sharing could kill a person (I am not being dramatic- look up chelating agents; is this something you would recommend for your child to take at home? Hint: no. It might kill them).

I am also a little shy to tell you how much money I spent on things I found online, especially when you consider previously stated academic qualifications. As you may be aware, flaring makes you desperate, and desperate people do not make sound judgements, at least I did not.

Starting a blog

So the blog, the mission was to talk about psoriasis from a research-based viewpoint and a patient perspective. There would be warmth and understanding instead of clinical coldness. I taught teenagers Science for many years and planned to use these skills to take academic research and explain it in a way so everyone, regardless of their education (or hatred of science) could understand what was happening to them and make more informed decisions...

But (and there's always a but when you have depression I have come to realize)...the blog I designed was awful, it was confusing and I didn't publish anything other than a few late nights raw posts when I couldn't sleep and I hated it. In hindsight, I probably would have hated it even if it was half decent, such is the nature of depression but there was no substance and so what was the point? I put the horror of a thing online anyway, there is one thing I do like and need in my life and that is a firm deadline. As I took to social media to tell no one about my shameful blog last October, something surprising happened.

I learned from inspiring people

The beauty of World Psoriasis Day is that everyone is advocating about your condition at the same time. This means there are a lot of incredible resources being shared by many different people from around the world all at once, so when you start looking, people are everywhere.

I found Brynee on YouTube, she talked about her experience with erythrodermic psoriasis, and her story had me in tears. This showed me that I did not need to rely on my blog to make a difference, that telling my story in any medium can help people.

I discovered the #getyourskinout campaign on Instagram which inspired me. I learned that patients have the power to change the world and I felt like part of a movement. Seeing beautiful images of people living with psoriasis on the Internet with lots of positive comments is very empowering.

I found people talking about topics that were a bit taboo. With advocates on Twitter sharing blog posts that they had written about issues such as depression and sex and dating-the things we rarely talk about. I learned from this that it is okay to be open. In fact, it is more than okay-it's essential to fight stigma.

So what next?

In early 2018 Instagram banned #getyourskinout, #psoriasis and many other psoriasis related hashtags. I felt outraged. I wanted to play my part. I crawled out from underneath my safety blanket and pitched article ideas to journalists. Because I had ignored my blog, I had no platform to fight from. Fortunately, through my activity on Twitter, I had connected with an editor at the European Medical Journal blog, and he was interested in the story.

I ended up writing the first academic article I had written in years, this article was about the stigma surrounding psoriasis and outlines the impact that banning a hashtag on Instagram can have on those of those living with a highly stigmatized disease.

I had forgotten the pleasure of academic writing. When you are depressed, you tend to forget a lot about what you like and as it turns out, I had pitched an article far outside my zone of expertise as a scientist who specializes in immunology and genetics. In my wider reading into psychological challenges experienced by those of us living with skin disease, I discovered the field of psycho-dermatology, and I was hooked.

Reigniting my love for research and writing was the beginning of the realization I had slowly fallen into depression, and it was the beginning of the journey back up.

Am I on target for World Psoriasis Day 2018?

One idea that kept niggling me from World Psoriasis Day last year was the effectiveness of different media; the use of podcasting and video.

I am a busy mum and most of the information I input on a daily basis is in the form of a podcast or video from YouTube or an online course. I procrastinated for a long time, but by June I realized I wouldn't be able to complete the goal of recording a podcast series dedicated to psoriasis if I didn't start. So I needed to get out of my own way.

I am now learning out loud which is still painful, but I am on target to complete the series in November, and at the time of writing, I am about to release episode 11 (the series ended up much longer then I expected).

Looking back to where I was last October, I don't recognize the person I was. I think this is very common when you suffer from depression. I know I am not quite there yet either. This is my first open confession about the state of my mental health. Do I think I would be where I am now if it was not for setting these goals? No. I wouldn't.

World Psoriasis Day is such an important event for me that my respect for it outweighed my personal procrastination.

How I set my goals so I knew I could succeed (and how can you do the same)

Goals are commonly set as SMART- although its a bit boardroom cliche, having measurable goals really is critical. So SMART: Specific, Measurable, Achievable, Relevant, and Time-bound.

(S) Specific- Clearly outline what you will do

(M) Measurable- Decide how you will know when this is completed (numbers are good)

(A) Achieve- Is this within your scope? Can I realistically do this?

(R) Relevant- Does this goals to help you achieve your overall goals?

(T) Time-bound- When will this be done? You need a clear deadline (and its even better if you announce it publically).

i.e. (S) I will write/blog/podcast about psoriasis and (M) publish a minimum of 7 articles/episodes (A) based on my knowledge as a scientist, educator and lifelong psoriatic (R) to increase my knowledge (T) in time for World Psoriasis Day 2018.

My goals for the upcoming year are to:

1. Record the second series of The Psoriasis Podcast,
2. To write a no-nonsense evidence-based guide for living with psoriasis,
3. To experiment with different strategies in everyday life to support my mental health.

And You?

How about you? Do you have any psoriasis related goals you could set for world psoriasis day?