I was recently invited to speak at Leo Pharma’s UK and Ireland conference to give a patient’s perspective of psoriasis. In case you don’t know who Leo are, many psoriasis patients will recognise two of their products in particular, Dovobet and Dovonex. I also had the pleasure of sharing the stage with the Flaky Fasionista. The theme of the conference was to ask why we do the things we do and the basis of my talk was four questions that Leo asked me about my blog which I have shared along with my answers below.
Why did I start the blog & other activities?
I didn’t talk to anyone about psoriasis, not how it affected me. Psoriasis is a very personal disease, it can make you feel ashamed and embarrassed and, being a little vain, I did not want anyone apart from my doctors to know how it made me feel. I didn’t want anyone worrying about me or knowing I couldn’t cope. I guess I felt I didn’t want my family thinking I was weak.
I wrote a piece on my the food blog I used to write with no intention to create a blog dedicated to psoriasis. Partly this was to just let it all out and partly for that year’s Psoriasis Awareness Week. Actually I only posted it publicly because of awareness week, it had previously been unpublished for about two months. The reaction to that first post was surprising. Many friends told me they had the same condition and had done the same as me, kept it private. I heard from other patients and it remained the most read piece on my food blog.
It was a few years later I decided to start a blog about psoriasis specifically. I can’t really remember exactly why. I remember I was going through another flare up and a particularly stressful time and thought that as well as getting it off my chest, it may help raise awareness. I had been speaking with the Psoriasis Association and other patients and thought there was a need to get the message out there, to show that this is more than a bit of dry skin.
I became more involved with the Psoriasis Association and felt that I wanted to contribute. I can’t offer a lot in the way of financial support so I help by getting the word out and supporting their cause.
My first post was very dark, something I had been wanting to tell my family about but had never had the courage. It was a post about the night I made the decision to fight psoriasis and not let it beat me. A night even now I struggle to tell people about. You can read this post here.
What keeps me doing it today?
First and foremost, my own mental wellbeing. I still do not talk to my friends and family a lot about the condition, well not how it really affects me. I find it easier to write my feelings down and let them read.
There is still a lot that needs to be done to improve patient care and it annoys me as to how patients are treated. There are some hospitals that give exceptional treatment. There are too many that do not, such as my local hospital that barely gives you a second thought, apart from the nurses.
The difference between the various healthcare professionals is something I am keen to point out. The nurses I have come into contact with are simply brilliant. They talk to you, empathise and understand that it’s not just a skin condition, there are mental issues that come with it. My GP is excellent, he does have a background in dermatology which helps and he is the reason I have never taken anti-depressants.
The consultants are much more hit and miss. There are the leading consultants who are paving the way for better treatment and pushing the campaigns then there are those who seem to just be taking their pay-check. I have seen numerous consultants, the same one only on two appointments and the information often varies. They do not agree on how long I should use steroid creams, some have not bothered to even look at my skin. Nearly always you are made to feel you are a hindrance and taking up their valuable time.
I also like to dispel some of the myths about psoriasis so it is a little bit about educating those without psoriasis. Things like it is not contagious and it not only stress related. Speaking of stress, it is not only when we can’t cope mentally, it is physical stress, when you’re ill and run-down, tired, your body is under physical stress. Personally I find physical stress causes flare ups more than mental stress. This fight for better treatment and my own personal fight against this condition also keeps me going.
Why did I feel inspired to reach out to others?
The original post on the food blog introduced me to the Psoriasis Community and one thing was clear. There was not a great deal of support, or people did not realise what support was out there. As a way of coping I wanted to help others find the support, mostly to stop them going to the dark place I had been.
No one understands psoriasis more than someone with psoriasis. My family and friends give me great support and will always admit they will never quite understand what I have gone through. It is not just to get together and a moan about psoriasis, which does happen, it is to learn from each other, how others cope, what have they found that works.
What keeps me helping others today?
I have not had the worst case of psoriasis ever and have met others who have had a much harder time of it than me. I do feel though that I have been to the edge of the despair and managed to claw back. I hope other patients will learn from my journey and experience.
I have remained very negative about psoriasis for many years, only changing this last year which almost resulted in me finishing the blog. I had clear skin, even though I knew it would come back, I had a new job which I love, things were on the up so what did I have to moan about? It was here I realised that I had turned the corner. I know my psoriasis will come back, it already has. This time though, I had seen that there was more to life than moaning about psoriasis and that my constant moaning can affect people around me.
So I thought it is best to continue and show people there is light at the end of the tunnel. You may not be able to get rid of this disease but you can learn to live with it. To show that you can continue to live your life and not allow psoriasis to live it for you. I always think we have two choices, fight or give up.
I don’t receive many comments on the blog, those that do get in touch help to keep me going. It is always nice to know that you are helping others whether that be to give other patients hope or to educate those who don’t have the condition.
The last thing I would say that keeps me going is a sense of purpose. I became lost with this condition. For years I kept asking why me? Contributing to awareness campaigns, supporting psoriasis charities and working with pharmaceutical companies to improve patient care, just possibly this is why I have psoriasis.