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The Life I Chose, the Life I Wonder About, and the Life I Love
by Chloe Want
March 24, 2026
The Life I Chose, the Life I Wonder About, and the Life I Love
My name is Chloe Want, and I have Usher syndrome type 1D. Finding out about this condition changed the path of my life in ways I never expected. I was just 14 years old when I was diagnosed, an age when most people are only just starting to dream about who they might become.
THE FEAR
Before my diagnosis, I had a very clear ambition: I wanted to be an actress. Drama was a huge part of my childhood. I loved performing, expressing myself, and stepping into different roles. It gave me confidence, freedom, and a sense of belonging. When I was on stage, I felt like I could truly be myself. As I got older and began thinking seriously about my future, I went to visit a college to look at a performing arts course. I still remember walking into the drama studio and noticing how dark it was. That moment filled me with fear. My thoughts immediately turned to my eyesight, my diagnosis, and everything that might go wrong in the future. Instead of focusing on my passion, I focused on my fear.
Because of that, I backed out of the course. And honestly, I really wish I hadn’t.
Drama was something I had loved since I was a young child, and part of me will always wonder what might have happened if I had stayed and joined that course. I don’t regret my life, but I do regret letting fear make that decision for me.
Chloe as Peter Pan in her first year at secondary school.
Chloe at the 2023 USHthis UK camp.
MY LIFE TODAY
Today, I am proud to be the President of an organization that supports hard of hearing young people across Europe. This role means a great deal to me, as it allows me to advocate for others, create connections, and help young people feel represented and understood. I also work with young people in a SEN (Special Educational Needs) school in the UK. It is a specialized educational setting for children with learning difficulties, disabilities, or needs that cannot be met in mainstream schools. My role as a Learning Partner, supporting those students with complex needs in 1-to-1 or small-group situations, gives me purpose and fulfilment every single day.
Last year, I married my wonderful husband, Mason, who supports me in every way possible. We bought our first home in 2024. We share our home with our two much-loved doggies, Milo and Marley who bring so much joy and comfort into our lives. My life is full of love, meaning, and stability, things my younger self couldn’t have imagined during some of my hardest moments. But being happy doesn’t mean I never think about the what ifs.
LOOKING BACK
Getting to where I am now took a huge amount of support, motivation, and resilience. My journey was far from straightforward. When I was at school, I didn’t pass my General Certification of Secondary Education (GCSE), and at the time, that felt devastating. I already felt different because of my diagnosis, and failing my exams only added to the feeling that I was falling behind everyone else.
I went on to retake my GCSEs at college, and eventually, I passed them. Looking back now, I’m incredibly proud of myself for not giving up, even when things felt overwhelming. But I also recognize how much time I spent worrying, especially about my eyesight. I allowed my anxiety about the future to take over my present, and I wish I hadn’t.
After college, I reached a point where I felt completely stuck. I had paused my dreams and aspirations and decided to get a job simply to earn money. At the time, it felt like the sensible and responsible thing to do. But now, with hindsight, I wish I had allowed myself more freedom. I wish I had travelled, explored, and enjoyed life instead of feeling like I needed to have everything figured out.
I could tell you countless wishes and regrets. I could talk about all the moments where fear held me back, or when I doubted my own abilities. But despite all of that, I am genuinely happy with my life. I truly believe that everything happens for a reason. If I had chosen a different course or career, I might not be where I am today. I might not be doing work that means so much to me. I might not have met the people who have shaped my life or grown into the person I am now.
Wedding photo of Chloe with her husband and dogs
So, while I sometimes wonder what my life might have looked like if I had taken that performing arts course, or gone to university. I am also proud of the choices I have made. Those choices led me to a life that feels authentic, purposeful, and meaningful. I think it is natural to wonder about alternative paths. To imagine different versions of ourselves. To ask, what would my life be like if I had made different decisions? I think this is especially true for those of us who are diagnosed with a life changing condition at a young age.
Chloe’s first time travelling solo with a cane to Strasbourg for the IFHOHYP study session
ADVICE FOR THE FUTURE
Which brings me to the most important part of this story. This is my biggest piece of advice to anyone who has been diagnosed young, or who is currently stuck in a cycle of fear and “what ifs”:
Do not worry about the future.
Do what you want to do.
Focus on the now.
Enjoy your life.
Your diagnosis does not define your limits. Fear is understandable, but it doesn’t deserve to make your decisions for you. The future will arrive whether you worry about it or not, so you might as well live fully in the present. If I could go back and speak to my 14 year old self, I would tell her this:
You are allowed to dream. You are allowed to try. And even if life doesn’t turn out the way you planned, you will still build a life you can be proud of.
And that’s exactly what I’ve done.
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