Finally getting a diagnosis for hidradenitis suppurativa

Although I have only been officially diagnosed for three months, I have suffered from hidradenitis suppurativa for the past nine years. Eight years of GP appointments followed by an eight month wait to see a dermatologist and I finally heard the dreaded words… Hidradenitis suppurativa (HS). 

After spending years in pain trying to convince myself that it was nothing to worry about, you’d think a diagnosis would get the ball rolling in the right direction! Instead, I have been constantly searching for answers and trying to reach out to communities that, unfortunately for men just don’t seem to exist. 

Family support for my skin condition

Thomas with his sons

I am so lucky to have a family that are supportive and can look beyond my disease. Whether this is helping me to bandage myself or just keeping me distracted from the pain. I am a father of four-year-old twin boys that keep me very busy! I find it so difficult to explain to my kids why sometimes daddy can’t play catch or run around chasing them.

Normal life with hidradenitis suppurativa 

Thomas's HS

Over the past nine years I have taken antibiotics regularly and use two or three boxes of bandages a week. This is normal life for me. I also really struggle to leave the house as people point out my scarring or bumps in the more noticeable areas. 

I’ve been through four surgeries, one with local anaesthetic and three with general – mostly on the back of my neck. These cuts are left open to heal from the inside out. Shout out to Mrs Roberts, my wife, who is always helping change the bandages without getting grossed-out!

Despite the surgeries, I still flare up in the same areas and this means I will likely need a skin graft in the future. This plays on my mind a lot. It keeps me up at night.

Why don’t we talk about skin conditions as men?

For many years, I have suffered with my mental health. I’ve tried different medications and have been through numerous councillors. I’ve always struggled to talk about HS openly and come to terms with how I feel, (this got 10 times worse after my diagnosis).

After being told by doctors that I’m not stuck with this condition and to simply give it some time, I searched the internet high and low for a male to relate to. There are very few men talking about this condition openly and all the men I found live in America. I have tried looking for male support groups in my area and they just do not exist. I have asked my GP if there were any support channels for men with HS and the response I received was, ‘No, be the change.’ 

Thomas's skin during a flare

Helping men with hidradenitis suppurativa 

So, this is why I’m here! I’m slowly teaching myself self-love and perseverance. I’ve vowed not to give up so easily!

I’m hoping that by laying all my cards on the table and being honest, I can encourage one more man to speak up or feel like they don’t need to hide their scars. They make you who you are, and I promise you that you’re handsome!

My dream is for HS to be more talked about and for people to start feeling beautiful. I want to get sufferers of HS in the public eye, on billboards, on tv adverts or even in films because WE ARE BEAUTIFUL! I want it to be a norm so people like me do not feel abnormal anymore.

Thomas Roberts 

Looking for some help? Find your nearest dermatology clinic here.  

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