I’m Hayley and I have the condition neurofibromatosis (NF), which causes tumours to grow on the nerves and skin.
NF has impacted me throughout my life, not only as a visible difference, but also in the form of learning difficulties. I struggled to concentrate during school, which was taken as bad behaviour or not listening. I also found it hard to express myself, and sometimes I would act out as a result.
As I entered adulthood, that’s when the visible difference side of NF came to be more challenging. The number of tumours grew all over my body. This made it harder to socialise, as I experienced name calling and being stared at. I’ve heard people make comments about my appearance to the people they’re with, which have been said loud enough for me to hear. It can be very hurtful. As such, I’ve found it difficult to trust people, because I feel my appearance is the first thing people see and judge, rather than my personality.
Depending on the day, I don’t always handle people’s comments very well. Sometimes I’m sad, other times I feel angry. Then there are times where I’d rather be invisible as I struggle to fit into a world that is so appearance focused. Self-acceptance and neurofibromatosis don’t often go hand in hand for me.
Getting out of my comfort zone is one of the biggest challenges for me. Nevertheless, I try to do it with a smile.
Before receiving support from Changing Faces, I found that talking to people about my struggles was just a tick list and that I wasn’t being truly heard. I’d be told that “it’s just a bad day” and that I’d be okay. I would open up and allow myself to be vulnerable with someone, only to be made to feel exactly the same afterwards, if not worse.
At first, I found talking through my problems extremely overwhelming. I was at a point where even talking about what I’d experienced had become a trigger for me, heightening my anxiety. However, Changing Faces genuinely listened to me and made me feel heard and seen for the first time.
Now I recognise the moments where I can feel proud of myself, because every day I get up and I put one foot in front of the other, and that isn’t always easy. I try my best and that is all I can do right now.
I’m always open to trying new things, but getting out of my comfort zone is one of the biggest challenges for me. Nevertheless, I try to do it with a smile, even though inside I wish I could change the way I look. I’m still searching for self-acceptance, but I’m getting there as best I can.
Thanks to Changing Faces, I found people who understand me, and I’m able to take steps forward.
