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It all started with ‘The good, the bad, the ugly’

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In 2020, I was lucky enough to have an article published by the British Skin Foundation. An article that lead to so much positivity. I didn’t know it at the time but being open about my experience of having HS really helped my mental health. The article reached far wider than I ever thought possible and was the first of many great conversations with incredible people from all over the world. Conversations that made me realise I was not alone. It also introduced me to the amazing team at HSConnect, for which I will be forever grateful. 

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For years I suffered in pain and silence. I felt completely consumed by this condition and my mental health took the full impact. For a long time, not even friends and family knew the extent of my struggles. Having HS (as I’m sure many of you know) can destroy your self-esteem and confidence. I grew to hate my body. I could not understand why this was happening and despite all of my efforts to remain positive, most days I would just break down and cry.  It’s bad enough that people with HS have to deal with the physical symptoms, let alone the mental health and quality of life implications that come with it right? For a long time, I was in a dark place. I didn’t love myself. (At the time, I didn’t even like myself) That just wasn’t me. I’ve always been a glass half full person. I’ve always felt passionate about the importance of loving yourself, but unfortunately, HS really made me lose these qualities for a while.

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Why is this relevant? Well… from the moment I started being open about my HS and my struggles, everything got better. Day by day, I felt less embarrassed. I felt less shame.  I started to remember that this was not something I could control, nor something I have caused. It’s just skin. Skin that sometimes causes me a lot of pain and discomfort. Skin that doesn’t always look how I’d like it to look. But that’s ok. I know that now. It took a while for me to feel this way and don’t get me wrong, it hasn’t been easy. To be so open about something so personal is terrifying but if we only ever stay within our comfort zone, then we will never achieve anything. I knew this was something I needed to do. Having support is great, but in the end the one person that can truly help you, is YOU. 

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So, this HS Awareness week, why not step out of your comfort zone. Last year, I shared so much of my personal experience on social media and the response was incredible. I shared my story to help other people understand Hidradenitis Suppurativa. I shared to raise awareness about a condition that I had not even heard of until I was diagnosed. I shared to make connections with people within the HS community. I am so glad I did. There are so many negatives to having HS, but there are also positives. HS has introduced me to so many incredible people. Far too many to list by name but if you are reading this, then thank you. Thank you for being so brave and open. Thank you for always showing kindness and positivity even when you are experiencing pain. You are amazing. 

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It’s not just me that has found positives in being open. It’s helped so many people. 

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Here is a message from the lovely Cat…

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“For me, deciding to talk openly about HS was actually quite empowering. I often felt like I was walking around with a secret that half of me wanted to scream out loud and the other half wanted to keep hidden forever, for fear of judgement or stigma. I learned that there’s power in vulnerability and that being open and unapologetically authentic was the key to self-acceptance. I have tremendous gratitude towards HS warriors who share their stories to help others.”

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(Cat is the reason I decided to be open in the first place. I read her article before getting mine published – she is incredible).

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I could go on about the benefits of being open, but now it’s your turn. HS Awareness Week (7th-13th June 2021) is an incredible opportunity to share your story.

 

If you don’t have HS, then why not help those that do by raising awareness.

 

If you don’t know what it is, then ask.

 

Read our articles. Share our posts. Get creative and get involved in HS Awareness expressions. Social media posts, posters, paintings, baked goods – anything you can do, will help. 

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If you are struggling with HS right now, please do reach out. Check out the support available through HSConnect and if you are from the UK then definitely visit The British Skin Foundation website where you can read research into Hidradenitis Suppurativa as well as mine and Cat’s stories!  https://www.britishskinfoundation.org.uk/ 

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Don’t forget to use #HSAwareness #HSAwarenessWeek #HSConnectOrg

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The HS Community is a powerful one, so let’s get talking! 

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