Cheryl’s Style: Navigating Neurofibromatosis

“Putting on the right outfit in the morning, one that makes me feel confident and strong, helps me start my day positively. I find that when I pick out pieces that make me feel powerful – regardless of whether it’s casual or formal wear – my happiness shows from with in. I’m more open to engaging with people and to stepping outside of my comfort zone.”

Since childhood, Cheryl has lived with health complications that have resulted from Neurofibromatosis (NF1): a genetic condition characterized by skin abnormalities and nervous system tumours, known as neurofibromas (tumours of the nerve fibres – usually benign), which grow throughout the body.

“For years, I hid myself behind baggy clothes and sweat pants. I did not want to be seen. I noticed, however, that once I started taking care of myself and putting an effort into my appearance and specifically clothing choices, I also started to feel better – emotionally and physically.”

Fashion has become both an outlet for self-expression and a tool for Cheryl to ensure that she feels comfortable and confident on a daily basis. To accommodate to neurofibromatosis, Cheryl looks for press-on tags or rips out the content care tags from her clothing.

“Those tags can be very painful at times since they rub and irritate my skin, especially my tumours. Sometimes the tags will even cut my neurofibromas open,” she explained. “For that reason, I don’t wear chunky jewellery, such as statement necklaces and bracelets, because they often hurt the fibromas around my neck.”

To add character to her outfits, Cheryl has several pairs of unique shoes and a bunch of different glasses that offer a pop of colour without compromising her comfort.

“Unfortunately, with NF, fibromas grow within the nerves. Some of the fibromas can be very painful, while others are just bothersome. Ultimately, I try to find clothes that don’t press on my more sensitive fibromas”, Cheryl elaborated.

The result, accordingly, is a closet full of pieces that are versatile and adaptable.

Quick Questions with Cheryl

1) How would you describe your style?

“That’s a tough question! I do not have one specific style. Rather, I have a set of styles that range from causal and cozy to power outfits. My clothing is a way to express myself and how I want to be perceived.  You can often tell my mood based on how I dress for the day. When I am at work, I like to be put together and confident, so that will be reflected in my clothing.  If I am going out to the movies with a friend, I will often wear something more comfortable, like jeans and a causal t-shirt. If I am having bad day or feeling insecure, I will often wear an outfit that makes me feel like standout!”

2) Where do people stumble with their understanding of neurofibromatosis? What wold you like to change?

“I think most people do not understand what NF really is, making it hard for people to grasp the full effects of it or really empathize with me or others living with NF. Instead, they sympathize. Everyone with NF has a different experience and has a different degree and manifestations of the symptoms. The symptoms and characteristics of NF are different for so many of us, and they range from mild to extremely debilitating. It is both emotionally and physically painful to live with. Many of us will experience learning disabilities and struggle with education. Others, such as myself, will be stared at and asked, “what is wrong with you?” We will be asked if we have a bug infestation, or if we are contagious or infectious, because people are afraid of what we look like. Even the medical community lacks a true and full understanding of NF. I would love for there to be more education and understanding what NF is and what it is not. I would love for there to be more publicity and recognition in the medical community for the need to come up with treatments – and, dare I say it – a cure.”

3) What advice would you give to others who are going through a similar health challenge that you have been through?

“For me, there are three pieces to this answer. Firstly, no matter what your challenge is – health or otherwise – you are going to have bad days. It’s important that you find those people in your life that love you for who you are. Secondly, share your story with others. I believe that the only way to change our circumstances is to rise above them and work towards making a difference. Sharing my story on As We Are is a huge step for me in acknowledging my NF and realizing that I have to share my story for others to learn about NF. And thirdly, learn to accept your challenges but not give in to them (I am still working on this one myself…I know it is not easy).”

When I asked Cheryl if there was anything else she wanted to say, she added: “Oh, most importantly – smile at your successes!”

Thank you to Cheryl for courageously sharing her story with us! We are so grateful for her honest insights, style tips, and thoughtful words of advice.