Chris' Story

“The Staying Positive workshops can help anyone who feels different or ‘not normal’ like I did."

Chris
Hull

Eighteen-year-old Chris Nolan is in his final year studying for qualifications in Public Services and Classical Civilisation at Wilberforce Sixth Form College, Hull. Chris lives with the hereditary condition, Charcot-Marie-Tooth (CMT) disease which is thought to affect around 23,000 people in the UK.

Although only formally diagnosed at the age of five, Chris was born with CMT and both his mother and younger sister also live with the condition although all are affected to varying degrees and in different ways.

Explaining how CMT affects him physically, Chris said: “The strength in my arms is affected and the muscles in my legs aren’t as strong as they should be. The muscles in my back are weak and my spine is quite curved. I used to have frequent falls up until about three years ago – sometimes once or twice a week – as my legs would just give way under me.

“I work on trying to build my strength and would love to be able to do more sport if I could. It’s frustrating when I see my mates running around playing football but I just can’t keep up. But I do other sports like badminton or volleyball and I really enjoy swimming – probably the only advantage of my condition is that because of my curved spine, my lung capacity is much greater and I can swim long distances under water!”

Chris has faced many difficulties while growing up – not only coping with the limitations his condition can place on him physically but also the severe bullying he was subjected to throughout his life. Chris added: “I was really badly bullied all through school. I used to walk in quite an odd way and so was an easy target. It made me very self-conscious and affected my confidence.”
Frustration has been something Chris has also battled with in his support from health care professionals and mainly down to the lack of understanding about CMT. Chris said: “Most health care professionals have never heard of the condition so every time I see someone new, I have to explain ‘this is what it is, this is how it affects me, how can you help me?’ before I then just get referred back to my original doctor again because they don’t know enough about the condition to be able to help me.

“Having said that, I have had the benefit of a great surgeon who I was under the care of since I was diagnosed up until last year when I moved from children’s services to adult services when I turned 18 and I’m now under the care of a doctor who specialises in backs who is really good.”

It was in the change from child to adult services that Chris was referred to the Staying Positive workshops by a Transition Matron. Both Chris and his younger sister enrolled for the series of three one-day workshops for young people aged 12-18 who live with a long-term health condition.

The workshops aim to give the young people the skills to improve the management of their condition both from a health and social perspective so includes activities such as socialising and friendships, school and careers, medication, feelings and emotions, and sex, drugs and alcohol in the context of having a medical condition for the older participants and puberty for the younger people in the group.

Chris added: “There’s no other support in Hull for people like us so I was really keen to give the workshops a go and see how they could help me.

“The activities were great – particularly the ones around dealing with sibling rivalry and bullying. I’d always felt that I was the only person who was being bullied and it made me realise I’m not the only one to have suffered from it and it was good to share our experiences with others in the group.”

Chris was also given the opportunity to train as a young facilitator after the Staying Positive workshops so he can now co-deliver courses to other young people with long-term health conditions. Chris added: “The training really boosted my confidence and has been a real help at college. I have to do presentations as part of my Public Services course and I used to be a nervous wreck, but now I’ve got real confidence to stand up in front of my classmates and this has all been down to the Staying Positive workshops and young facilitator training.”
Chris is keen to encourage other young people to have the courage to get the help and support he received. He said: “The Staying Positive workshops can help anyone who feels different or ‘not normal’ like I did. Everyone there, including the facilitators have a long-term health condition. They may be different conditions to yours but we all go through the same challenges and feelings so it can really help you. You might also make some new friends on the way.”