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:
- Record the second series of The Psoriasis Podcast,
- To write a no-nonsense evidence-based guide for living with psoriasis,
- To experiment with different strategies in everyday life to support my mental health.
How about you? Do you have any psoriasis related goals you could set for world psoriasis day?