Disability History Month – IIona’s Story

In the first interview in our disability series, I spoke with 39-year-old Ilona Brunyanszki, the People and Culture Administrator.

Born and raised in Hungary, Ilona has lived in the USA, Italy, Qatar, Singapore, and now the UK.

This is Ilona’s disability story.

“I began to have ‘movement related’ symptoms about eight years ago and started going to the doctor to see what the issue was. I worked in the sport and leisure industry and was in gymnastics, so I knew what it felt like when my body wasn’t working the way it used to. I suspected that something was wrong as my symptoms got progressively worse. I went to many doctors in four different countries because they couldn’t figure out what was wrong. I was finally diagnosed three years ago with a rare and progressive motor neuron disease.

It was hard to accept why it happened to me when I had a healthy and active lifestyle, and I am still relatively young. It wasn’t a good feeling getting the diagnosis, but it wasn’t a shock as I had my suspicions during the years of countless examinations. I have a rare disease at a rare age. I then had to think about what my career or my future would look like. Now I look at it as a lesson from life and I try to enjoy every little thing, because I never know how long they will last.

SIG is my first non-sport related job since my diagnosis as I took a break to focus on my health and recovery. When I took the job, I disclosed my disease at the application stage. Then I had an assessment with AXA once I started, where I also flagged it up. I had a very thorough meeting with my line manager, where I was asked what adjustments I would need, what good days and bad days look like for me and how I can be supported.

I am able to complete my responsibilities without any adjustments at the moment, but it’s good to know that they would be offered if needed. The role offered means I don’t have to come in every day, so it suits me. I have a flexible schedule, which allows me to get to my exercises, which I get a 10% discount for via Medicash, the same as everyone else.

I think in the UK, disability is thought about and considered, although not 100%. There are always adjustments that can be made. For instance, on public transport, there are seats for disabled but sometimes able-bodied people use them. I’ve never asked someone for a seat because I don’t look disabled unless people see me moving and realise I have an issue. Then they sometimes offer me a seat. I don’t want to be treated differently because I have special needs, so I don’t draw attention to myself.

I wish people who are not disabled would be patient because I sometimes receive comments or have also been pushed. Because I am slow on the stairs, especially during rush hours. So, now I start work early so that l can get a seat and don’t have to deal with the crowds.

SIG pays attention to those with disabilities and provides for individual needs. They provide everything I need, and I think that they have done enough for me because they provide even things that I hadn’t thought about. Certain questions I was asked made me think that they really care.

It is a good feeling knowing that I am amongst people who look after each other, whether disabled or not.”

Ilona, we thank you for sharing your story with us and wish you all the very best in the future.

Motor Neuron disease is an uncommon condition that mainly affects people in their 60s and 70s, but it can affect adults of all ages. There’s no cure, but treatment can help reduce the impact the symptoms have on your life. It affects more than 5,000 adults in the UK at any one time.