Steph Cutler

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Steph Cutler


Length of time you have lived with LHON

Just over ten years

I was an ambitious fashion designer living a work hard/play hard lifestyle in London prior to becoming visually impaired. I discovered I did not have full sight in one of my eyes by accident whilst on holiday. I was not concerned and it took me a while to go to an optician to get it checked out.

When my parents found out they immediately knew it was LHON as they knew more about the condition than I did. When they told me I felt sure they were about to tell me bad news about my sister, who was on honeymoon at the time. I was so glad that my sister was alright that I took the news of sight loss with relief! When the consultant told me I was going to lose my central vision I did not know what that meant. I made a vow that whatever it meant, it was not going to mean the end. This vow has been very helpful to me over the years.

I decided very early on that sitting at home learning to live with sight loss was never going to help me learn to live with sight loss. I forced myself to go out and about and do the things I used to do. It was emotionally and practically difficult at times, but the more I did it the easier it became.

I set myself some goals, one of which was to become employable again. I attended a college for visually impaired people and began to learn how to use assistive technology. It was the hardest thing I have had to learn, but I had an amazing teacher and I worked super hard to learn how to access a computer. This was definitely the right thing for me to do as I found that once I had ways to access information the world began to open up to me again.

My life now is pretty good. It is very different to my life prior to LHON. Acquiring LHON has impacted on my life hugely. I feel I am a more empathetic person and I have a wider perspective on the world around me. I have a positive approach which LHON has heightened and I am more organised and I think more creatively about solving problems. This is often because I have to, due to my sight loss, but the outcome is beneficial in my personal and professional life. I have met lots of fantastic people who I would never have met had I not become visually impaired. I still have all my old friends too.

I decided that the fashion industry wasn’t for me once I had become visually impaired. This was tough at first, as it would not have been my choice to leave my career behind in this way. I found looking for employment as a visually impaired person disproportionately difficult and so I decided to employ myself. LHON has been very influential in my work. My business delivers disability awareness to organisations and personal development training and coaching to disabled people. My lived experience is very important to my work. I love being self-employed and the work that I do. It is not an easy option, but it is a very fulfilling way to make a living and I would not have this, had I not been affected by LHON.

It is my belief that no one achieves anything alone. We all need support from time to time in our lives. Acquiring LHON will be one of those times. It will be unhelpful to be too proud to ask for support. I have found that as time goes by you require less and less support and so it is worth it in the long run. Consider how you would like your life to be and set some small, achievable goals in-line with this. I found it helpful to be clear about how I wanted things to be and what that was going to take. This was particularly motivating on tough days.

Looking back, the other thing I did which turned out to be a good idea was to tell all the people close to me about my diagnosis.  I was in my late twenties and had lots of friends who were an important part of my life. I did not want to lose any friendships so I decided to be bold and tell everyone personally. It wasn’t easy but it did mean that people were aware of what was going on and because I was open, they were open with me in return. I know lots of people who try and keep their impairment to themselves and it only seems to cause them stress.