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Lianne Hunter | The Importance of Building a Psoriasis Community

I was diagnosed with psoriasis when I was five, so I don’t really remember life without it. Growing up I was very fortunate to be surrounded by incredibly supportive people who helped me to not only accept my psoriasis but to be confident with it too. For the most part I have been able to embrace it, choosing not to hide my spots away and to talk openly about the condition and the impacts it has on my life.

Whilst there is lots of information on how to deal with the physical impacts of psoriasis – from creams and lotions to the various treatment options available – I found that despite the increasingly explored link between psoriasis and mental health issues such as depression, there is very little advice or people to talk to about dealing with the emotional effects of having psoriasis, which is arguably the hardest part to deal with.

 

Talking helps!

As the saying goes – a problem shared is a problem halved! Over the years I found that talking about my psoriasis really helped, but as I rarely met anybody else who had psoriasis I never felt fully understood. Until you have experienced the unpredictable nature of psoriasis first hand, it can be really hard to truly understand how somebody is feeling.

And so, a couple of years ago I started a blog, a Twitter account and most recently an Instagram channel called @FixMyPsoriasis to find people to talk to, who also have psoriasis and can relate to what I am going through on a daily basis. I wanted to create a space that explored the emotional impacts, allowing me to express my feelings, document my journey through pictures of my skin and share my feelings and things that I learn along my way, in the hope that it would reach others looking for information, help or support.

As I connected and chatted with people across my channels I was amazed to discover that I wasn’t alone – there’s a massive and ever-growing community of people with psoriasis all sharing and discussing their journeys – from their daily struggles and upsets, treatment triumphs and frustrations, to coping mechanisms when coming to terms with the condition.

Through this community I have had the absolute pleasure of meeting two fellow bloggers with psoriasis who, like me, are on a mission to raise as much awareness of the condition as possible, whilst breaking down barriers and encouraging others to feel comfortable in their own skin.

We recently travelled to Amsterdam together to film a video for Psoriasis Awareness Week 2016 (more on that in October). Whilst there we spent hours sharing our experiences from over the years, talking about the treatments we've tried, to the creams we've smothered ourselves with, to the endless hilarious jokes we've made to people when they question our psoriasis. It felt amazing to be able to share something that plays a huge part in my life with people who not only got it, but live with it every day too. As we parted ways at the airport I felt really grateful for my psoriasis. Without it I would never have met these beautifully inspiring and brave ladies.

Lianne Holly Bryony sitting - Psoriasis

Lianne, Holly, Bryony standning - Psoriasis

Now I know that talking about your psoriasis can be hard and for some, a daunting prospect, but the beauty of social media means that you can join, follow and read from a distance until you feel ready to participate. By connecting with the community it provides instant access to a support network of people who know first-hand the daily struggles you go through, who understand better than most where you are coming from, and who are willing and happy to share help, kind words and inspiration without expecting anything in return.

 

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How to get started?

You can connect and build your community in three simple steps.

Step 1

Set up your accounts – you can follow people from your personal accounts or create psoriasis-specific accounts, if that makes you feel more comfortable.   

Step 2

Find people to follow - the easiest way to find these people is by simply searching #psoriasis on Twitter and Instagram or by joining the various different groups set up on Facebook. I’ve also included a couple of my favourites below, and all channels will provide recommendations based on the people you follow.

Step 3

Build your community – once up and running, feel free to join the conversations and share your tips. There are a variety of planned and impromptu psoriasis-themed twitter chats to participate in, including the #psochat, which looks at a different theme each month.

 

Who inspires me?

I’ve discovered loads and loads of truly inspirational people, a couple of my favourites include:

#GetYourSkinOut – Holly’s campaign is exactly as it says – inspiring and empowering people to embrace their psoriasis, get their skin out and help raise awareness of the condition to others. This provides massive encouragement to anybody feeling nervous about showing their skin. Just check out the hashtag, you’d be amazed at how many of us are doing it.

Bryneenee – Bryony is a 21-year old beauty therapist with guttate psoriasis. She’s currently documenting her flare since coming off medication, sharing make-up tips and tricks for covering your psoriasis, as well as the latest tried and tested products for maintaining beautifully dyed hair whilst having scalp psoriasis. Even her worst flare won’t stop her from wearing her favourite crop-top.

Facesofpsoriasis – this is a fairly new Instagram channel but a fantastic idea. With nearly 3% of the world affected by psoriasis, Mara’s aim is to share the many faces of psoriasis and their individual stories. The perfect way for us to get to know the every growing psoriasis community!

I can be also be found on Twitter and Instagram at @FixMyPsoriasis – get involved and join the conversation!

 

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About HelloSkin

HelloSkin is the world's first online store for people with psoriasis. We provide a meticulous selection of non-prescription products ranging from creamslotionsointmentsbath additives and shower products to nutritional supplements and accessories.

Our team of experts research all products for scientific evidence and present the information in order for people to make a considered choice for their psoriasis. The mission is to provide transparency in the product selection process and provide people with all available product information at one place.

 

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