Support us Your stories Living with stories Chinny's story Chinny has whole body dystonia (generalised dystonia) and channels her feelings about the condition into her art. Whole body dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements in the whole body. Typically, the condition starts in a limb and then ‘generalises’ to other areas. I started having the symptoms of dystonia at age 12, though at the time the doctor didn't call it dystonia. I lived in Nigeria, Africa where they knew little or nothing about dystonia or disability; having a medical condition I knew nothing about was a nightmare. I changed. I hated life, it was an embarrassing sickness which triggered in public and I didn't want to go to school anymore. I just wasn’t living. From a little happy girl I changed into a sad depressed child. I was just 12 and I didn't understand, so I had to grow up fast. My parents insisted I would go to school and I’m thankful they raised me to be very independent. My mom would always say don't segregate yourself. It was easy for her to say because she was my mom, to her I was the same girl no matter what - but for me, it was different. I was bullied a lot but despite this I was still a very brilliant student at school and my teachers loved me and that inspired me to continue school no matter how others stared at me or mocked me. I graduated from high school with excellent results as expected. I had relatives who decided to convince my parents to allow me come to their church in hope for a miracle. Many times when I went there they would label me a demon, it was really a mental trauma but I was so lucky because I was very intelligent and they couldn’t brainwash me with their ignorance and stupidity. In 2015 I moved to England to study in Cambridge where I was given a place to study optometry. Moving to England was the best thing that happened to me, I felt so welcomed and I did well in my first year but not without struggle. Dystonia hit me so hard I felt really sick; I lost my balance, I couldn’t even walk and I was passing out every other day. I went from being a super independent girl to having no balance and then after seeing a neurologist in Cambridge I discovered all the while in Nigeria I had been seeing the wrong doctors and taking the wrong medications. I was properly diagnosed after almost 10 years with generalised dystonia with an unknown cause. In January 2018 I lost my mother in a gas explosion back in Nigeria and this worsened my condition, I had to fight because depression was crippling in, and my pain got worse. When I moved to London it was so hard to get a house to rent because of my dystonia, I had so many rejections from ignorant landlords. I went back into fine art and channelled all my pains into my paintings and I made an art illustration of dystonia which was in an exhibition and it became my healing art. In November 2018 I went through a successful DBS surgery and now I wouldn’t just say I’m living with dystonia I would rather say I am dystonic and fabulous. So many times I feel I missed out on life because while my mates were graduating and getting their lives I was being sick, but I gained so much too. I am so honoured that I could be an inspiration and a symbol of joy and hope to a lot of people.