Joanne was diagnosed with NF2 in 1999, marking the beginning of a challenging journey. A surgery to remove a vestibular schwannoma left her profoundly deaf and with right-side facial palsy early on in her diagnosis. Another surgery in 2008 to debulk a left vestibular schwannoma then resulted in 6th nerve palsy, affecting her eye movements. Over the years, she has undergone various surgeries on her eyes and a facial reanimation in 2012 to offset the palsy on the right side of her face.

“Differences can be lonely, isolating and depressing and I think by accepting we can try to overcome some of these obstacles and be more comfortable within ourselves. Confidence and acceptance are such massive things and they take a long time to come to terms with. It takes a lot to love yourself and be comfortable with who you are so that you can advocate for yourself & others or (like me) in the NF2 community. I have a good support network around me (both family and friends). I think this is incredibly important, especially for feelings of loneliness. We need someone to say, ‘you can.’”

Living with a visible difference has greatly affected her life and she has her struggles with self-acceptance, isolation, and the quest for confidence. Having lived her early life without noticeable differences, without bullying, her childhood and young adult years fostered a sense of security and acceptance. This changed after her diagnosis and more so after her later reanimation surgery.

"It took me a long time to accept myself after my NF2 diagnosis. After my first surgery I had facial palsy for 13 years. I had to learn to accept myself again. I just wanted to smile again on the outside to reflect my inner smiles, and so I chose to have facial reanimation surgery. It left me shocked afterwards when I looked in the mirror and it wasn’t me anymore. I hated it. It was time to learn to accept another whole new me again! It took a good 3-4 months for me to say, 'Okay, yes, this is okay.'" Her journey to acceptance has been difficult at times, marked by moments of self-doubt and the pressure to look 'normal.’

“I think I probably spent too much time trying to get back to me in those early days. I wanted to go back to how I was before so desperately, but that doesn't happen.” After her diagnosis and surgeries, she would buy expensive clothes to distract from the facial differences in herself that she hated. "I thought people would see the nice clothes even if I didn’t have a nice face to match. Yes, I did think I was ugly."

During her early years, she would hate to have her photograph taken, disliking the way she saw herself in the images. She would refuse or shy away from the camera. One day she realised that there would be no images of her with her children or for them to look back on one day, so she started getting in the photographs with her family and friends, creating lasting memories together. “This may sound morbid, but I didn’t want my boys to not have any images of me when I die, so it changed my perception.”

Recently she encountered teenagers staring and whispering about her. Those whispered comments were not audible to Joanne but still hurtful, another reminder of society's struggle to accept visible differences. “I know that it could be an educational moment to approach people and discuss differences but I just don’t have the confidence to do it. Being deaf I couldn’t hear what was being said, I don’t know if maybe that is a blessing at times.”

In society today there is a lack of representation of people who look different. This underrepresentation, she believes, is historical and goes all the way back to periods when people with visible differences were actively hidden from society/ They were not shown in public, especially not in art or popular culture. This has helped pave the way for today's society to focus on an illusion of perfection and for people who look different to be misrepresented as villains, as throughout history, right up to today, media has cultivated the wrong impressions.

Today she has a hope and determination to shift perceptions, using her experiences to educate and advocate for greater empathy and inclusion for those with visible differences. Her experiences are proof of the need for greater awareness. Joanne believes that for acceptance of visible differences, projects like Rarely Reframed and more advocacy and representation are essential.

“We need to start with education from a young age. We need to change the way people with visible differences are on screen, what they're portrayed as. That needs to be a huge thing, yes there have been some storylines on some shows but there really could be so much more.”

“My son's school recently had ‘Diversity Day.’ I think it would be a perfect time to cover physical differences, not just race, religion and culture, but open it wider to educate more about visible and physical differences. I think it would be an ideal time to celebrate our differences.”

The advocacy work that Joanne does is deeply personal. Not only for herself and her family but also for the NF2 community. One of her sons has also been diagnosed with NF2, but she has seen a huge improvement in treatment pathways in the 25 years since her diagnosis and has a lot of hope for him in the future. She dreams of a world where differences are celebrated, not stigmatised. “This quote is from a 13 year old NF2er in Canada, but it resonates with me. ‘Why fit in when you are born to stand out?!’”

“On my journey of acceptance, I am now trying to push the boundaries as Chief Operations Officer at NF2 BioSolutions UK & Europe, trying to up the confidence levels in taking part in meetings both in person and online. I try to advocate as much as I can, raising awareness about how NF2 can affect us. People need to learn to embrace our differences for us to move on. It takes a lot to love yourself and be comfortable with who you are so that you can advocate for yourself and others, like the NF2 community.”