Staring, dating and swimming when you have scleroderma - Hannah’s visible difference story

When Hannah was 14 she started to notice a patchwork of marks on her skin. It took 18 months to find out that the marks were caused by an autoimmune disorder called scleroderma, which affects the skin. Hannah says the timing couldn’t have been worse.

“Being a teenager I was feeling self-conscious anyway about how I looked and then I developed these marks that were very noticeable. It had a huge impact on my life. I stopped looking in the mirror, I covered up my body and it was a really negative time.”

On one occasion, Hannah went to the beach with her family and wore a bikini but she immediately noticed people were staring at her and says it really set her back. She went back to wearing baggy clothes and wouldn’t look at herself in the mirror.

School was also difficult, as she was missing out on lots of things due to doctor’s appointments, which just made her feel even more different. When she was 15 years old she was bullied at school because of the way she looked.

“One group of girls did an awful drawing of me and put it on social media. They tried to publicly shame me. The school was hopeless and just told me to ‘stay away from them’. It was like it was my fault.”

By age 17, Hannah was ready to get some help and started seeing a counsellor which she says really helped. However university was tough at times and Hannah would often go home and get support from her family, especially her mum.

Hannah had started dating when she was at school but found it was often difficult because she felt self-conscious about the marks on her body. One partner wouldn’t look at the marks or talk about them, which made her even more self-conscious.

“I wouldn’t take my clothes off in front of my boyfriends, I’d want the lights off – I just didn’t want to be looked at. I would put my hands over my stomach to cover up the marks. I was ashamed of how I looked.”

Meeting her current partner on Tinder at the age of 21 marked a huge change for Hannah.

“We started our relationship at a distance as we met online so that was great as I really got to know him first and felt I could tell him anything about my skin condition and my scars. He asked questions and was interested – I’d never had that before and it made me feel so much more confident. In previous relationships I was always quite wary and never really relaxed. This time it was so different and I felt so comfortable because he was so open about everything.”

Hannah says this partnership has had a huge impact on her, especially when it comes to her self-confidence.

“I used to feel I had to tell everyone everything – now I decide when I want to tell them about myself. I don’t mind being photographed now, which I always hated before. I’m also much more confident and less wary of people – I’m no longer scared of what people think.”

Hannah now works in the media and is also supporting charities like Changing Faces by sharing her experiences.

“There are days when I still get irritated by people’s reactions. The other day I went swimming and a group of teenage girls were looking at the scars on my stomach. I don’t want to get angry but I do want respect. I want to say to people “don’t judge as you don’t know what I’ve been through”.

If you would like to read more visible difference stories or submit your own, head over to our Your Stories page on the website >>> changingfaces.org.uk/advice...