Living with an invisible illness: A day in the life of an HS sufferer

It’s not often you have a day that you know you’ll remember forever.

When I agreed to take part in a 24-hour immersion project to help raise awareness about hidradenitis suppurativa (HS) I had to admit I’d never heard of the disease. Not many people have, which is shocking because 130,000 Australians have HS. Just to put that in perspective, only 23,000 Australians have MS, yet we all know about multiple sclerosis.

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A day in the life of a HS sufferer

Shelly Horton takes a walk in the shoes of someone with Hidradenitis suppurativa (HS), a chronic skin condition that affects about 130,000 Australians.

It’s because HS can cause lesions, nodules and boils. Painful-looking lumps in the armpits, under the breasts and in the groin area. It’s an auto-immune disease that’s not infectious, nor contagious, yet no one talks about it, well, because it’s embarrassing. Experts believe up to 93 per cent of those with HS have been misdiagnosed or not sought help because they are embarrassed by their symptoms.

It affects more women than men and while the exact cause is unknown, smoking and obesity are risk factors.

I accepted the challenge to spend a day walking in the shoes of an HS sufferer.

It started with a letter from Olivia Thompson, she’s 20 and has had HS since she was eight. In the letter she said, “During this exercise you are going to experience things you probably would have thought unimaginable. But also with this comes things you will not fully be able to understand. On no level can someone without HS realise the levels of pain we experience and how it affects our every movement and activity. Nor will you fully experience what this pain does to your body through vomiting and fainting when things get to be too much. Aside from this, you will gain an insight into how this invisible illness is visible to us who suffer from it and what we have to fight through each day to have any type of life.”

So with that weighing heavily on my mind, I started the process.

Before bed I had to apply cumbersome dressings under each arm and around my groin. It felt revolting. Upon waking I had to shower to remove the dressings (which really hurt) and then apply them all again. Then AbbVie (the company that funded the experiment) made me underwear with ping-pong balls sewn in to represent boils and a bra covered with ping-pong balls and metal ball bearings to rub under the breasts. I had restraints placed around my arms and legs because the boils are painful and lead to scarring that restricts movement.

I no longer felt like my body was my own. The simple task of walking up and down stairs had to be mentally negotiated and attacked step by step. Every time I sat down the ping-pong balls cause pain to shoot inside me.

My entire day was controlled by text messages. Firstly, I would be sent tasks such as to drive my car to a meeting. Sounds simple but the arm restraints meant I could only control the car with the bottom third of the steering wheel and speed bumps brought a new level of pain.

Then I’d get text messages from the disease itself. HS telling me: “Look around, these people have no idea of what I’m doing to you. Your pain is yours alone to endure.”

But the hardest texts were from Olivia, “Back in the beginning, when I was eight, I thought I was dying. I’d never had so much incredible pain. I kept saying ‘Mum, what’s wrong with me?'”

There were 73 text messages like that, and they broke me.

The frustration at not being able to move, the pain from the restraints and ping-pong balls and the pure empathy I had for Olivia had me crying. 

It was made worse knowing this was only one day for me. After 24 hours I could remove the restraints and uncomfortable underwear. This has been Olivia’s norm for 12 years.

When I finally met Olivia, she cried too, and thanked me for taking part, so that others might understand what it’s like for her and other HS sufferers every single day.

Olivia’s illness has meant she has had to take time out off from her studies, she applies creams, ice packs and takes painkillers to manage her symptoms. It’s not fun.  

There is also a huge emotional burden for patients who can feel embarrassed and self-conscious about lesions that can leak a foul-smelling discharge at any time

I did a lot of soul searching after this project. Vowed to be more grateful for my good health. I now have so much compassion for HS sufferers. I hope I have played a small part in raising HS awareness to the general public. If you think you, or a loved one, might have HS I urge you to go to There are treatment strategies available.

I will never forget that day. Instead of an immersion project I think it should be renamed an empathy project.

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