Hidradenitis Suppurativa:

The good, the bad, the ugly

by bethan emery

        bemery92

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If you’re familiar with this condition, then no doubt the first thing you’ll wonder is, “what’s good about hidradenitis suppurativa?” You’re right to question that.

The Bad

I was diagnosed with hidradenitis suppurativa (HS) in 2016, aged 24. After roughly 10 months of recurrent abscesses in my groin, three different creams, two types of antibiotics and more invasive examinations then I care to remember, I was finally sent for an urgent referral with the dermatology department of my local hospital. She took one glance at my skin and said the words ‘hidradenitis suppurativa’.

The condition itself, just like its name, is far from straightforward.

“Hidradenitis suppurativa (HS) is a chronic, non-contagious (that bit is important to remember) skin disease, which appears as boil-like abscesses in the apocrine gland-bearing areas, such as the armpits, breasts and groin.”  Many people with the condition also develop a pilonidal sinus, which is a small hole (tunnel) in the skin.  – HS Trust     

Unfortunately, diagnosis didn’t bring any kind of relief for me, because HS is incurable. That’s right. Incurable. Most people have it for life and whilst there are some cases of remission, there’s always the chance it’ll come back. Months of pain and antibiotics followed my dermatology appointment. It became unbearable, not so much physically, but mentally.

The day after Halloween 2016,  I remember all too clearly, or not so clearly depending on how you look at it. That day was the first day of many that I struggled to get out of bed. The first day of many that I couldn’t carry on faking a smile. The first day of my depression. I’m not blaming HS in its entirety for needing to take antidepressants just to get out of bed in the mornings, but it definitely played a big part. It consumed me everyday. It took over my life and started to take a toll on my mental well being.

The Ugly

Even though HS is quite unpleasant to look at, I would never call it ugly. To call it ugly would be to call part of myself and everyone who suffers with it ugly. That’s not something I believe is true. This part is what I’d refer to as 'the ugly truth'.

The ugly truth that nobody sees;

  • The times where you’re at work or out socialising and an abscess bursts. You try to get the bleeding under control in a toilet cubicle whilst doing everything you can to not cry.

  • How you feel when you look at yourself in the mirror and hate the reflection looking back at you.

  • When you have to cancel plans because the pain and bleeding is too much.

  • The brand new unworn underwear. Why wear it when it'll only get blood stained?

  • When you try every ointment, oil, home remedy and ludicrous attempt at trying to ease the pain.

  • When the skin around your abscess is unbearably itchy and inflamed.

  • When you spend 10 months of a year on antibiotics – ironically not helping the HS at all but doing a splendid job at giving you thrush!

  • When you realise that surgery may be the only option.

  • When the thought of putting on a bikini or swimsuit makes you want to run and hide.

  • The very reality whereby a 27 year old woman avoids dating and meeting people out of fear and embarrassment. (Let’s face it, HS is hardly the biggest turn on.)

The ugly truth is that this may never change.

The Good

At the beginning, I said that you'd be right to question what’s good about hidradenitis suppurativa. Most of the time, there’s nothing good about it at all.

For me, it’s been five years and it certainly hasn’t gotten any easier. Over time the pain becomes more of a constant state of being, rather than an obvious discomfort. If you were to ask me now if I was in pain, I’d probably say no, but only because in my normality, throbbing abscesses and bleeding is just a part of everyday life. But it’s not all bad. I don’t need to take antidepressants anymore. I don’t hate the reflection staring back at me in the mirror.

 

The good is that HS has given me is acceptance - I have learned to love myself wholeheartedly.

We live in a society that is so focused on appearance - the Instagram generation. Images of perfect bodies and perfect skin are everywhere. It can be so damaging to those of us who feel less than perfect.

Today, tomorrow and each day that follows I will do everything I can to keep positive. I will do everything I can to not lose myself again.

For my next beach holiday, instead of feeling dread, I am determined to get in a bikini and be proud of my body. I’ve learned to love my wobbly bits so why can’t I love my abscesses and scars too?

Something I have grown to learn and understand is, we are not alone. There’s a whole world of HS warriors. So many people suffer in silence or alone. If you suffer from HS consider joining an online support group.

Just remember, nobody asks for this condition. It is not linked to poor hygiene and it is NOT contagious. This condition is not something to feel ashamed about.

It’s just skin.

Bethan Emery

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