Psoriasis: 11 Things I Wish I’d Known
Have you just been diagnosed with psoriasis?
Have you jumped on Google and immediately been freaked out at the pictures? Are you desperately searching for ‘the cure’ or at least the reason (there has to be a reason, right?!) why this horrible skin disease (disease!) has chosen you?
My friend, slow down. All is not as bad as it seems. Honestly, it’s not. And I’m qualified to say that as a psoriasis sufferer for (gulp) seventeen years. That’s half my life now.
You might have already read my story about how I started my own journey with psorasis. Back in 1999, the internet was in its infancy and looking up forums for fellow psoriasis suffers, or even cures, was not something I thought of doing.
Over the years I learned lots about the disease, a lot about myself and a fair bit about other people too.
Here’s what I wish I had known from the beginning. It’s the kind of advice I would have appreciated in the first few weeks of my diagnosis. I hope you find it useful.
1 – Psoriasis Is Not Permanent
Yes, it’s chronic. That means it’s lifelong. BUT, it doesn’t mean your skin will always be covered in red, itchy and flakey patches. You will have periods of remission, when your skin is almost (maybe totally!) smooth, soft and clear of dreaded P! But then you will have darker days, when it feels as though the pain and misery of psoriasis will never go away.
Always remember there are better days ahead. It comes and goes. Although psoriasis is chronic, it doesn’t have to be permanent.
2 – You Are Not Alone
When I was diagnosed, I felt ever so alone. No-one in my family had it. I didn’t know anyone else with it. I didn’t know anyone with eczema or acne, so couldn’t even talk ‘skin’ with another sufferer.
As the years went on – and the internet became more of a thing (*waves*), I learned that I wasn’t alone. Psoriasis affects one in fifty people. That means that in the UK alone, there are another 1.28 million sufferers, just like you and me, out there. Over one million guys and girls stressing about skin, itching like mad, freaking out about flakes, booking trips to the doctors and trying out new treatments. There are loads of us. We are working in offices in your city, treating your relatives in hospital, teaching your children in schools, running errands, cooking dinner with loved ones, going on first dates and having bbq’s with friends. Psoriasis suffers just get on with life. Albeit with a much higher regard for their skin!
3 – Read (And Write!) Blogs
Blogs have been life changing for me. In fact, if it wasn’t for blogging, you wouldn’t be reading this now. Some of the people I was talking about in the point above are blogging too.
Psoriasis bloggers can alert you to new treatments, help with questions, share stories, provide fashion advice and generally be another person you can turn to when you’re feeling a bit blah. Psoriasis bloggers will be able to provide personal day to day insight into the disease that you can’t really get from a non-sufferer. As much as friends and family can be supportive, they don’t really ‘get it’ as well as a fellow flaky.
I highly recommend starting a blog. Ok, you don’t have to make it public, but writing definitely helps things. It’s good to get your feelings out on paper (or screen). It feels like a release. And remember, even if you feel you have nothing new to add to the conversation (which I highly doubt, we all have our own experiences worth sharing), your readers will want to hear you and your own unique voice. We all have one, so don’t be afraid to speak up.
There are my favourite psoriasis bloggers:
4 – Eat Well
One of my favourite social psoriasis people is Jon Maddison (Psoriasis Buddy!). He advocates healthy, clean eating and has cleaned up his own skin – and that of others, by recommending a strict vegan diet. You can find him on YouTube, Facebook and Instagram. He has his own blog too.
I’m sure food plays a part in our psoriasis. My skin usually feels itchy and much more dry after eating an Indian takeaway for example. You can assist (maybe heal, who knows) your skin’s progress by eating a fresh, plant-based diet. Although personally, I don’t think a take away once in a while is going to kill you or cause a massive reaction.
5 – Be Open To New Treatments
There are new treatments coming out all the time. Try them. But give yourself a good six – eight weeks of proper trying before you expect to see any results.
Currently, I’m testing out the Philips BlueControl LED treatment. It’s a small LED device that you can strap onto your arms and legs on the areas you have psoriasis.
It’s a totally new concept for me; light therapy. I was refused this on the NHS as my psoriasis doesn’t cover more than 30% of my body. Now, this light therapy available to the consumer market, means I can treat my skin how and when I please. On my terms. It’s light and comfortable to wear, not messy and I can just get on with my day without having to worry about staining furniture or clothes. It’s still early days, but already after one week, my skin is definitely flatter.Others have had even better results! So, I need to be patient and keep doing what I’m doing. I feel good things could come from this.
6 – Moisturise! Moisturise! Moisturise!
My house is a treasure trove of moisturisers. I have lotions and potions in every room. Even my car, handbag and desk at work are home to an array of tubes and tubs of various moisturisers and creams I have accumulated over the years.
You can never have enough moisturisers. And personally, I don’t like the NHS prescribed ones. They are ugly and smell gross. If I’m going to have psoriasis, and be reminded of it by needing to moisturise one hundred times a day*, I may as well have nice moisturisers to hand and dotted around me.
My favourites are:
The Sanctuary Body Butter
Body Shop Hemp
L’Occitane Shea (when I’m feeling flush!)
Palmer’s Cocoa Butter
Lush Sympathy For The Skin (I have read other bloggers who have raved about Lush Dream Cream. I found this hurt my psoriasis. Sympathy For The Skin is much kinder and I think it smells nicer too.)
7 – You Are Not Your Disease
When you’re deep in the psoriasis fog; researching treatments, looking at pictures and stressing about your skin, it can be hard to think outside of the psoriasis box. You feel consumed by your disease. You feel like you are your disease! But you’re not. I promise. It’s just a small part of you. Just like you have brown hair or blue eyes, you now have psoriasis too. But it doesn’t mean that the skin disease has you. At least, as long as you don’t let it. Just like being a little bit short, or having thinning hair or knobbly knees, you just have to find a way to work around your skin. Fortunately, there is a tonne of stuff that can help.
These organisations are a good place to start.
Pro Tip: Don’t spend too much time researching. You could be doing it for hours… days even. There is no cure, so don’t spend your time looking for it. Slap on some moisturiser and do something more fun instead. 🙂
8 – Famous People Get It Too
It does make me feel a bit better knowing that people beautiful famous types, like Cara Delevingne, are suffers too. The famous can highlight the plight of psoriasis by giving voice to the disease, raising awareness, so people know about it (it’s not contagious!) and generally being open about having non-perfect skin.
These are my other favourite celebrity psoriasis warriors:
Caridee English (America’s Next Top Model): A sufferer since five years old, CariDee published photos of herself when 70% of her body was covered in psoriasis to raise awareness of the disease.
LeAnn Rimes (Singer): Diagnosed when she was two, now the country and western singer is a big psoriasis awareness campaigner with her Stop Hiding, Start Living Campaign.
Alan Carr: Slightly less glamorous, but probably much funnier. Alan is open about his skin and how it has affected him over the years.
Jon Lovitz: The Saturday Night Live comedian is also ‘out’ with his skin.
“There were nights that I would toss and turn from the itchiness and pain. In the morning, I would wake up to flakes covering the bed sheets and my clothes. Everywhere I went, I left a little bit of Jon Lovitz behind… only not in a good way.”
There’s a good article here about his journey.
I’ll offer a nod to Kim Kardashian – another psoriasis sufferer. But she doesn’t get my vote thanks to the way the skin disease was portrayed in her TV show.
9 – Non-Famous People Get It Too
Maybe even more reasurring than a famous person getting psoriasis, is another average Joe, like you and me, getting the disease. It’s even better when they’re open about it and share their story. Here are a couple of people with interesting experiences. I’ll write a full post on my favourite stories soon.
10 – Be An Advocate
Today you have psoriasis. Tomorrow, another person just like you will be diagnosed with it. You now have a responsibility to be a voice for our skin condition. If you have it in you, speak up. Write a blog, do a talk at a local school, take photos and share them on Pinterest. Now is your opportunity to share your story with the world. And it is your story. We all have different experiences and attitudes towards our skin, but together we can ensure the psoriasis community stands united and supports new sufferers with open, possibly red and flaky, arms. When you’re first diagnosed, it might feel like the end of the world. In fact, it’s the beginning of a new journey. One that doesn’t have to be sad or stressful.
11: YOU ARE LOVED
Perhaps the most important point of all. Regardless of your skin, there are people who love you. Don’t push them away. Share your worries, fears, excitement over new treatments with them. They will want to help and get involved.
Warning: This might happen! YES, I have tried E45! (Just smile and nod. They are only trying to be helpful)
*Ok, that’s a slight exaggeration!
So those are my top tips. What about you? What would you liked to have known from Day One? Add your ideas in the comments below.