It took several months and 15 consultants before schoolgirl Skye Wheeler was diagnosed with myalgic encephalopathy (ME), also known as Chronic Fatigue Syndrome (CFS).
But that was just the beginning of the teenager’s problems.
She says: “You’re left with feelings of hopelessness, isolation and loneliness – and overall a massive question mark. They tell you you’ve got a syndrome but no-one knows how it came about or how to cure it.
“People - even family - react negatively. There’s a complete lack of understanding and knowledge. They think you’re making it up or dismiss it as yuppy flu.
“One A&E nurse told me ‘You’re young and fit, you’ll be fine.’”
Skye, who believes her ME may have been caused by a serious eye condition, was close to despair when she discovered Milton Keynes-based charity AYME (Association of Young People with ME) on the internet.
Her anger is apparent as she says: “I was not given this information by any health care professional, as you might think.”
Luckily AYME – which celebrates its 20th anniversary this year – came to her rescue immediately. And she claims her experience with the caring and campaigning organisation has been one of the only positives in her struggle with the ‘invisible illness.’
She was put in touch with other youngsters in similar circumstances and provided with support and advice, as well as the promise of ongoing care when she turns 18.
Skye is currently an apprentice pharmacy technician but admits: “I crash regularly and still find life very hard. But last year I won the Youth Ambition Award for Taking Control of Your Life.
“My ultimate goal is to be a paramedic.”