Lapping up the rays on my sun lounger, I watched as my nine-year-old son James, leapt in and out of the swimming pool. ‘Mum, look at this!’ he shouted, as he cannon-balled into the deep end. ‘Oh wow,’ I laughed.
But my mood soon changed. Staring right at me, a man shot me a filthy look. Fixing his eyes on my skin, he looked disgusted. By now, I was used to it, but it still hurt. I had neurofibromatosis type 1 (NF1) – a condition that meant my body was covered in hundreds of bubble-like tumours. They’re non-cancerous but come with a host of symptoms.
I’d had it for most of my life and whenever I went on holiday, I made sure that I covered up. But wearing a vest over my bikini could only hide so much. ‘You look like you’ve been attacked by a crocodile,’ the man mocked. I was taken aback.
How could somebody be so mean and rude? I wondered. I tried to ignore his words, but I could feel tears beginning to sting my eyes. Ever since I was a teenager, I’d had to put up with nasty comments.
Aged 14, I first noticed a small lump on my neck. My dad, Peter, suffered from NF, so I showed my mum, Ann. ‘I think I’ve got Dad’s condition,’ I said. ‘I’ll book a doctor’s appointment,’ Mum said.
The GP confirmed my worst fears. I was gutted, and from then on, I covered my body as best I could.
Getting changed for sports at school, I waited until everyone else had left the changing rooms. As I got older, my confidence plummeted even further. My condition would stop me from going out or wearing certain things – worried what people would think if they saw my skin.
If I was feeling a bit braver, I’d soon regret it. ‘Have you got chicken pox?’ a man laughed, as I bared a bit more flesh than usual one day. It became relentless. I started having laser surgery to help keep the lumps at bay. It was incredibly painful but the process was worth it. But still, I worried that no-one would ever love me for me.
So when I bumped into Mike, five years after I’d first met him on a course, I felt like I’d finally met somebody who saw past my appearance. Our friendship quickly blossomed into love and I knew he didn’t care how I looked. For the first time ever, I felt like I was being treated as human.
I fell pregnant with a little girl but pregnancy only seemed to make my condition worse. ‘The change in hormones can have an effect on NF1,’ the doctor explained. I now had lumps all over my face, neck, arms, back, stomach and legs. But having a family was all worth it.
After Siobhan came along, we had Logan, plus Mike’s daughter from a previous relationship, Chloe, and my son, James, from a previous relationship. Almost 10 years after we reconnected, Mike and I got married in 2013. Being so happy at home, meant I wasn’t as self-conscious about going out as I had been before, but I still made sure I covered up.
Then, in 2018, I was contacted by a TV producer to appear on a new show that embraced differences. The aim was to put a group of people together – all with different appearances – and confront prejudices. ‘I think I’m going to do it,’ I said to Mike. ‘Go for it,’ he encouraged.
Being with other people who had all struggled with their appearance gave me the confidence to talk about my condition for the first time. I even stripped down to a bikini! It was nerve-racking, but exhilarating at the same time. Once I got home, I felt more confident than ever. And I made a firm decision.
‘I’m not covering up on the beach this year,’ I told Mike. ‘I’m going to wear a bikini.’ It would be the first time since I was a teenager. ‘That’s great,’ Mike said. So, heading to the water, I wore my bikini with pride. ‘I don’t care what people think anymore,’ I said to Mike.
And for the first time ever, I was starting to mean it.
I figured people were going to look at me either way, so what difference did it make? It was still scary but I’m so glad I did it. Now, I’ve started a Facebook group called Neurofibromatosis Our World for people with the same condition. It gives people a chance to talk to someone going through the same thing.
For a long time, I had no-one to talk to about my experience and I don’t want anyone else to feel that way. After years of relentless jibes, I’m starting to feel comfortable in my own skin. I still have laser surgery as my condition is only getting worse with age, but I’m finally learning to live with it.
Mike and our kids all see past my lumps. It’s taken me a long time to get here, but now I can too.
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