Jessica Kellgren-Hayes

Jessica, who was a finalist on the BBC's "Britain's Missing Top Model", has kindly taken the time to talk to us about the difficulties of living with ME and how she is striving to overcome its challenges.

Q So you appeared on the show Britain’s Missing Top Model; tell us what it was like? Do you often get recognised by the public now?

A The show itself was quite tiring; it was a lot of fun and really good to do. It highlighted a lot of the issues people with ME or general invisibility suffer with. I have 2 types of invisible disabilities. One is my nerves, and the other of course is ME.

Q The show seemed geared up to showing society what people come up against with a disability, and how closed minded people can be, yet because your disability wasn’t visually obvious even the other girls had a hard time accepting you into the group.

A Strangely, I hadn’t really experienced anyone doubting my ability or lack of ability to do things until the show. My family, friends and school had been very supportive. I went into the show thinking we’d all band together and all the girls would help each other out as there were different things we could and couldn’t do. There were girls there with communication problems and then I couldn’t do things like open jars, but I was very surprised that between the girls there was this hierarchy almost.

I needed to lie down a lot and rest in-between shoots. While my hair and makeup was being done, I wouldn’t be chatting because I’d be having a rest between the shoots. The hair and makeup people and photographers were great with that, except for the other girls.

Q What is it you are doing now?

A Well I finished the show 3 years ago. I then finished up doing my A levels as they had been interrupted by me being ill. I couldn’t do a full day at school, so I had to do them part-time. That took me up to June last year, and then I started at Brighton University in September where I’m studying the History of Design, Culture and Society.

Q When did your illness start?

A Looking back at it, I was diagnosed at 15, but I’d actually had it since I was about 8 but it hadn’t been diagnosed or noticed. Obviously it had been made worse quite slowly. At 17, I lost the use of both my arms through my other disability which is (Hereditary Neuropathy with liability to Pressure Palsies or HNPP), and I couldn’t recover from that. I was ill and tired as well as the physical problems. So they were trying to work out what had happened. Around then, I don’t remember a year and a half of what happened because of the brain fog.

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