When my mental wellbeing dips I still, like everyone have a full life to manage, and I do the best I can. This includes looking after my Hidradenitis. A week ago my mental health got so bad I needed to seek professional input and I thought I would share with you part of our conversation.
Doctor; Have you got any other medical conditions we should be aware of?
Me; Er yes. I had a heart op in 2010 for Arrythmia
Doctor; Ok that’s fine, Anything else?
Me; Er yes I’m living with hidradenitis suppurativa.
Doctor; Hidra –what?
Me; oh its ok it’s a skin condition and it still seems many people haven’t heard of it. Would you like me to spell it for you?
Doctor; yes please.
The impact of living with hidradenitis suppurativa
I then went on to explain how it affects me, physically but also mentally. Living with hidradenitis suppurativa is so challenging. I find myself almost having to apologise for having it, that’s how embarrassed it can make me feel.
This situation has happened to me on more than one occasion, and even when I have explained it to friends and family, they minimise what it is.
HS affects more than my physical health
Having mental health challenges can also be similar to my Hidradenitis – I never know when I will get a flare, I under-estimate how fatigued it will make me feel, I forget how many times I will just say to people ‘I’m fine’ when actually I am far from it.
This is why I write about hidradenitis suppurativa – because until its fully understood and accepted by those around us, we won’t get the love, care and support that is needed from managing such a troublesome condition. It can be very draining having to explain to someone when they say “hidra-what?” but to do so is to help both yourself and others who also have this condition.
Things are looking up
To finish on a positive note, things are changing – there are now more awareness groups, support campaigns and medical research than ever before. You can now get HS specific dressings that allow you to live your best life within the constraints of a long-term condition and thus do the things that you love.
So next time someone says ‘hidra-what?’ point them in the direction of websites such as this or share some of your own lived experience, and together we can make a difference.
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About the Author
Clare Knighton is a Peer support worker from Worcester, England. Clare lives with HS and has done so for the past ten years. She is passionate about helping others to talk more openly about the condition and about improving our mental wellbeing.