I Am More Than Just Skin: How I Found Myself While Battling Hidradenitis Suppurativa

I am more than just skin.

About 5 years ago, I battled with mental ill health. I found myself in a place of darkness. Depression. A word often used to describe a ‘bad day’ or in place of feeling sad. I can assure you, it’s neither of those things. The truth is depression consumes you. You can’t see past the fog and the smallest of tasks like getting out of bed in the mornings, can be overwhelming.

Why did this happen? Well, there were several contributing factors at the time, but the biggest contributor was HS, or Hidradenitis Suppurativa. Two words that I could once barely even pronounce. I had spent 10 months in pain, discomfort, and more invasive examinations then I’d like to admit. 10 months of doctors appointments. 10 months of pointless treatments for illnesses I didn’t have. 10 months before a diagnosis. It took 10 months, for me to lose myself.

HS made me hate who I was. I felt embarrassed. I couldn’t look at my skin, or myself in the way that I used to. At the time, I couldn’t see past the ugly. It destroyed my self-esteem. I had little to no confidence and I guess it was easier to slip into the shadows of my mind then face my reality.

I was stuck there for a while. It took a lot of support from family, friends, and medication to get me out of that place. It wasn’t easy. I struggled with mental ill health for years after. I still do on occasion. But something changed in 2020. In 2020, the world faced a pandemic. An event that could have so easily sent me back to the shadows, and yet it didn’t. For me, it felt like for the first time in a long time I could finally see clearly. I had experienced physical pain and discomfort and I had experienced mental pain and discomfort. I had experienced it all and I was done. I didn’t want to go back to feeling like that and I certainly wasn’t going to let something out of my control, send me there. The pandemic gave me the opportunity to invest time in myself. I found a work life balance that allowed me to focus on my mental and physical health. I truly prioritised self-care for the first time in, well, forever. I’ve worked hard at getting fitter and healthier. I’ve worked hard at changing my mindset, outlook on life and my thought processes. This worked. In the past year, I’ve not had many HS flares and the ones I have experienced have not caused me many levels of discomfort like they used to I’m not saying this is a direct result of a new lifestyle, because there is so much more to it than that. This isn’t the answer for everyone and that needs to be made clear, but, for me it has helped.

HS is incurable. The likelihood is, my HS may get worse over time. I’ve grown to accept that. I now know that it’s not something I can control, nor can I prevent it from happening. And if I cannot control it, I will not let it consume me. I will keep focusing on what I can control. I will keep prioritising my health. I will eat nutritional food. I will exercise. I will rest. I will do the things that make me happy and say no to the things that don’t. I will surround myself with good people. I will read. I will write. I will give my mind the opportunity to speak and I will allow myself to feel. I will, where possible remain positive because I am more than just skin.

About the author

Bethan Emery