Amy O’Connell, 34, from Beaconsfield, Buckinghamshire, has hidradenitis suppurativa – a painful long term condition that causes abscesses and scarring on the skin.
Speaking to Metro.co.uk for our You Don’t Look Sick series, Amy explains: ‘The sweat glands get blocked, which causes a cyst that is full of poison.
‘Sometimes it will rise to the surface and burst like a boil. This is excruciating.
‘More often than not they don’t rise to the surface, leaving a huge swelling under the skin that you can’t treat at all.
‘If this does heal, it leaves a pocket where it’s been and the next one will start there. It will grow around it and it causes huge clusters.
‘I began to get them in my groin at first, and then my armpits, then under my boobs and I get them randomly on my stomach and hips now.
‘The scars are not the end either. They leave uneven skin and deep wounds and some can take months and months to heal. Some never do heal completely.’
She has lived with the condition since her periods started as a teenager and her hormone levels started to change.
She explains: ‘They were always just diagnosed as boils. I was treated with so many different medicines but none of them worked.
‘I was told it was because I was overweight so I lost weight. It didn’t stop.
‘I was told it was because of bacteria that was coming out my nose and settling in certain areas as the cysts would grow in the armpits, chest and groin.
‘I was told I wasn’t washing properly so I washed with an iodine solution for a while but they were still there.’
As she got older, the abscesses continued to appear but she wasn’t given any answers and nothing seemed to treat them.
She says: ‘It was always something I had done and nothing could help.
‘I was given seriously strong antibiotics but those would have me struggling due to side effects.
‘I just accepted this was something I had and this was the broken body I was given and I found a way to cope with it.’
As she wasn’t given a diagnosis, the condition got much worse over time.
She explains: ‘I was making it worse and I had no idea. At the age of 15, I had a contraceptive injection which really upset my whole system and my hormone imbalances.
‘It was too much for my body and I think it definitely heightened the effects of the HS.’
Throughout her 20s, Amy struggled with the pain associated with HS as she almost constantly had boils on some part of her body.
It got much worse when she fell pregnant 13 years ago and had her daughter and again when she had her second child six years ago.
Eventually, her condition became so severe, she struggled to lift her arms.
She adds: ‘It was so bad for me. The cysts under my left arm were so big, which meant I couldn’t do things like lifting my children.
‘I developed little ways to do all sorts of things without lifting my arm fully. I don’t think anyone, even me, realised I was doing that.’
After her son was born, she happened to be watching daytime TV when she saw something that changed her life.
‘I was watching This Morning and a girl was on there saying her armpit had exploded,’ Amy said.
‘She was describing what happens when a huge cyst bursts.
‘The girl in the story had one cyst but I had clusters on my whole body. I sat and sobbed. I had a name of something called hidradenitis suppurativa.
‘I went to see a doctor and said: “Do you think I have this?” They said yes but it was so bittersweet.’
Amy was told that although she now had a reason why this had been happening to her for so long, there was no cure for HS.
‘I thought now I was diagnosed I would get relief, but I realised I was just going to get new ways of dealing with it. It was never going away,’ she says.
‘I remember collapsing on the staircase in the hospital with my mum and my daughter and just sitting there sobbing.’
She started taking Roaccutane, which is a drug normally used for severe acne.
Although it helped with her symptoms, it caused other problems.
She adds: ‘It was the worst thing I ever took but it gave me the most relief I’ve ever had from this pain.
‘They basically dry you out from the inside. They were to try and stop me producing anything, anywhere. It dried my skin out. My mouth was always dry, my skin cracked and bled wherever you have to bend. My hair started to fall out. It was horrendous.’
But then Amy saw a new dermatologist who suggested that surgery could help to remove some of the disease from Amy’s body.
‘She looked at me and said “You know in Europe we just cut this out. Do you want surgery?”
‘I’d never known it was an option. I could have had it years ago. I could have never even gotten to this if I’d been diagnosed properly.
‘As I left that appointment my whole world changed. I could feel myself and my life again and I could feel a way out.’
After that moment, Amy felt that her life was going to change. She left an abusive relationship after 10 years and decided to cut ties with her sister because they also had a difficult relationship.
She says that the condition had caused her self-confidence to diminish bit by bit but now she felt like she had a future.
She had the first operation in December 2014 to remove the disease in her left armpit, as this was the arm she couldn’t fully lift.
Amy says: ‘It totally changed my life. I went into the operation with the understanding that they didn’t really know how deep the swellings went or how much they would need to cut out until they got in there.
‘I went to sleep expecting skin grafts but I had extra skin on the back of my arm and I was given what is called a flap.
‘They cut the area out and used a piece of my own skin in its place. It was done with stitches and no skin grafts and the healing process was so different.
‘I was in tremendous pain when I woke up. I looked like a Frankenstein rag doll that had been sewn together in the dark.
‘It was hard on so many levels. My children couldn’t look at me as it was scary for them.
‘But instantly the pressure was gone and it was a million times better than before. I soldiered on and was doing school runs again within a few weeks.’
The sensation in her armpit has changed as some of the nerves have been damaged but she doesn’t have pain in that area like before.
In 2015, she had an operation on her chest to remove more of the disease but unfortunately, it was not as successful.
She says: ‘I don’t think there was much understanding of how bad it was. There was so much talk about my breasts and how they didn’t want to touch them but the disease was in there.
‘I even discussed having both breasts removed as a really extreme choice. It wasn’t necessary but I was prepared for everything to go to get this disease out.
‘I fell asleep thinking I would have skin grafts on my legs and buttocks and possibly a whole new chest, but I woke up almost the same.
‘They managed to cut it out up under until it hit my boob and then they stopped. I avoided skin grafts for a second time and they just pushed my stomach up a bit and glued and stitched.
‘Unfortunately, the disease grew back almost instantly along the scar and it can’t be operated on again. It didn’t work but it did take a good 60% of the pain.’
The operation severely impacted Amy’s mental health and she was angry that she had not had more removed before it grew back.
Following the setback, she wasn’t sure whether to continue with more surgery but in Summer 2017, she decided to have another operation on her right arm, again using staples and skin flaps.
Sadly, Amy was told that the disease is too widespread in her groin area and cannot be removed completely, which still causes her a huge amount of pain. They can operate on smaller areas that won’t heal but HS will always be there.
And although the operations she has had have helped, they have caused some other problems.
She explains: ‘I struggle to regulate my body temperature without sweat glands and have had blackouts in the summer.
‘I have had to carry iced bottles of water with me to cool me down as I walk and I have routes I know that are in the shade.
‘I also can’t wear a bra most days as the scars under my boobs are always sore and can be easily irritated and inflamed. I have big boobs and it isn’t easy but it’s worse to be in pain so I wear sports bras and tight clothes to keep everything in place.
‘I love to look good but need to always be in clothing that can breathe and doesn’t irritate. Jeans are a no-no.
‘I can’t use many lotions and products with perfumes and colours. Everything makes me sore and has the possibility of blocking my pores.’
Amy takes antibiotics and painkillers to try to control her symptoms – but those also affect her quality of life.
She says: ‘The antibiotics don’t take it away for long and I am developing immunity to some so they won’t work as well.
‘Painkillers, however, make me drowsy. I have had falls from being so drowsy.
‘I have a brilliant support network though. My daughter has dressed me in the past, helped me in and out of the bath and cared for me and her brother on a level that was unfair to her but we are a strong family unit.’
Amy also suffers from vitamin deficiencies because of the condition and it has had an impact on her whole body, as well as on her mental health.
She adds: ‘It can be hard and painful on my body and some days I can’t eat it hurts too much. Some days I can’t leave the house and I can’t face social situations anymore.
‘My hair is almost white/grey too from the stress and strain. I dye it purple and it gives me the strength to know I’m in control of my body choices wherever I can be.
‘It’s hard when a disease takes power from you but there are ways to take it back.
‘All of my friendships are on hold too. I’m not at a place where I can talk properly about this and so although I have friends, I struggle to have close relationships.’
Despite the difficulties of the condition, Amy says that she has started to come to terms with living with HS but says it is difficult for other people to understand.
She says: ‘I am so proud of these scars and I don’t want to be questioned about them.
‘I don’t really go out when I’m really bad but I have lied before when using disabled toilets. I have just said I need to use it because of a bad leg rather than saying its hidradenitis suppurativa.
‘I don’t want to have to educate someone or be on the receiving end of their ignorance or abuse or even their sympathy and pity.’
‘You don’t know what someone is going through so a bit of consideration for the people you see day-to-day is not much to ask for.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected]
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