Stacey Clarkin’s body is covered in scars from a chronic condition, yet she refuses to let them define her. Catherine Scott meets the inspirational mum,
But since the age of 14, Stacey has been battling a debilitating condition which means her body is a mass of scars.
“I have had 16 operations to including a skin graft. As a result I have massive scars on my chest, thighs, groin and buttocks,” says the mother-of-one from Methley, Leeds. But Stacey refuses to let her disfigurement define her and next week when she and Lottie go on holiday to Ibiza she will be wearing a bikini.
“I don’t mind if people look at me, I have nothing to be ashamed of. I have always talked to Lottie about my scars, in fact we make up stories about them. It is my way of trying to stop her being scared when I have to go into hospital and have more operations.
“If I then went and covered up on the beach what message is that giving to her?”
Stacey suffers from Hidradenitis Suppurativa – or HS for short.
HS causes painful cysts and absesses in sensitive areas of the body including between the breasts, groin and buttocks.
Despite affecting around 600,000 people, it is still a little known condition even among health professionals with many people suffeering in silence.
There is no cure and it often leads to serious surgery which involves the affected area being removed and skin grafts often needed to repair the damaged area.
For Stacey it has meant years of pain and suffering, but the 37- year-old single mother doesn’t let it get her down.
“There were times when I really struggled, especially for the seven years before I got a diagnosis. But recently I decided that this condition was not going to control me and my life, I was going to control it and as a result I have had less flair ups,” says Stacey.
“I used to let it stop me doing things. I felt I couldn’t go anywhere or book a holiday in case I had a flare-up and needed to have surgery. But now I have decided to take back control and Lottie and I have big plans to travel.” Stacey started suffering cysts between her breasts at the age of 14.
“They were really painful and I had no idea what they were. They just kept coming back.
I remember having to wear my mum’s Cross Your Heart bras because they hurt less, but not the best thing when you are 14.
“It was embarrassing and I didn’t tell anyone about it, only my mum.”
The situation continued until Stacey was at university and suffered a very large and painful cyst on her chest.
“My mum paid for me to see a private doctor and he diagnosed HS. There really wasn’t very much information about it on the internet and they just gave me some antibiotics.”
Shortly after that Stacey started to get absesses in other parts of her body, including her groin and buttocks.
“I have had so many different combinations of drugs over the years and it is hard to know if any of them work because of the nature of the flare-ups.”
At its worst Stacey was suffering flare-ups on a monthly basis.
“Just as one cyst was going another would flare up somewhere else, it does start to effect you emotional well being as well.”
When she was 25 she had the first of 16 operations which saw a huge infected cyst removed from between her breasts. I ended up with a huge hole between my boobs which scarred really badly and so I ended up having plastic surgery.”
Despite her condition, Stacey says she is lucky.
“I have an amazing plastic surgeon in Leeds who has been with me for 12 years. My brother has the same condition and he lives down south and seems to see a different surgeon every time he has a flare-up,” says Stacey, who used to be manager of Saltaire’s Victoria Hall.
Six years ago she decided to retrain to become a midwife.
“I really like helping people and thought being a midwife would be a good way of doing that.” But Stacey’s dream was soon dashed as a combination of working shifts and being in clinical areas where there are a lot of infections had a detrimental affect on her condition.
“I ended up having six operations in one year. So I had to give up my dream.”
Instead this determined woman now works as a patient advice and liaison officer with PALS, helping patients cope with the NHS system she know so well.
“If it hadn’t been for my condition then I wouldn’t be in the unique position to do the job I am and help the people that I am helping.”
Stacey is also following another dream, becoming a wedding planner in her spare time.
“It is something that I always wanted to do but felt I couldn’t let people down if I had to suddenly go into hospital. But now I am launching Lottie Loves which is more of a consultancy for people wanting to do a DIY wedding. I asked myself what does Lottie, a child, love about weddings and that for me is the essence of a good wedding.”
Talking to Stacey it is hard not be caught up in her positivity, but it hasn’t always been so.
“I am nervous I suppose about getting into a relationship.
“But I am happy. Lottie is my life and along with my mum we are a really strong unit. I like to keep busy and am also carer for my dad who is really poorly,” says Stacey who has even walked the Great Wall of China for mental health charity MIND after her sister in law suffered severe post-natal depression and she has set up a support group for single parents, which saw her nominated Mum of the Year.
“Particularly in the last year I have learnt how to deal with my condition. We have become a well oiled machine when it does flare up and we have to have a duvet day. When a flare-up is coming I experience terrible fatigue and Lottie calls herself my nurse. Everyone rallies round and gives me support. I feel very lucky. Lottie has been fantastic, She has grown up with me going in and out of hospital and coming home with yet another scar. But I really believe that talking to her about them and making up stories better prepares her for anything that might happen to her. I am worried that she might also develop it, but I know that if she does we are so much better prepared than when I developed it to help her deal with it.”