Living with illness and stigma

A dark cloud has hovered over the majority of Katharine Wener's 20 years.

Her constant companion since the age of seven has been an illness which is often misunderstood, mislabelled and misinterpreted and it shows no signs of disappearing.

It leaves Katharine, of Woodville Road, Barnet, in a permanent state of exhaustion and weakness, unable to leave the house unless in a wheelchair.

Many days are spent in agonising limbo between being asleep and awake. Sometimes even performing the smallest, routine tasks eating a meal, reading a newspaper can require a Herculean effort to complete.

Katharine has ME (Myalgic Encephalomyelitis) or Chronic Fatigue Syndrome. It's a chronic disabling syndrome that manifests itself in different forms, including: aching limbs, lack of energy, confused thought-patterns and extreme sensitivity to light and noise.

Around 250,000 people in the UK suffer from it yet some still believe it is simply a manifestation of the sufferer's mind. There is, at present, no cure.

"It's very isolating. Sometimes it's hard to live with," said Katharine. "My legs will ache and I feel weak, I won't have any strength whatsoever. On bad days it is a struggle even climbing the stairs."

Dr Nigel Speight, an ME expert and children's paediatrician at Durham Hospital, said: "In many sufferers' cases, it is like running a marathon with a bout of flu on board."

"It's completely exhausting, leaving them unable to do anything."

Instead of being the ghostly, depressed spectre you may expect, Katharine is a pretty, sweet-natured and articulate girl who, in many aspects, is a normal 20-year-old.

She enjoys watching films listing Fargo, The Sound Of Music, Pulp Fiction and Audrey Hepburn classics among her favourites. She likes emailing her friends on MSN Messenger, listening to classical and pop music and watching television.

Yet while others her age are furthering their education, travelling the globe and experiencing the familiar rites of passage into adulthood, Katharine is imprisoned by her condition unable to go to the pub, cinema or anywhere that requires leaving her home for a sustained period of time.

"I would like to do the things that other people my age do, like staying out late and enjoying myself. Even just to spend an afternoon shopping without a care would be so nice," said Katharine. "It's been with me for 13 years."

As a seven-year-old, Katharine was a promising ballerina, highly rated by her teachers at the Lesley Hand school in Avondale Avenue, Barnet.

She dreamed of one day becoming a famous dancer and had the agility to make it more than a flight of fancy.

It was a dream cruelly cut short when Katharine contracted glandular fever which in turn led to her ME the familiar pattern of many sufferers, of another illness seemingly breaking down the immune system and allowing ME to prosper.

From being a popular pupil at Church Hill School in East Barnet, Katharine became an outcast. Her friends, not understanding why she had to take so much time off, turned against her. Other children bullied her for being different.

"If she had broken her leg, they would have understood. It's because they didn't understand that they singled her out for bullying," explained Katharine's mother, Linda.

At the age of 12, the symptoms grew progressively worse, to the point where Katharine could no longer actually function day-to-day.

She was unable to walk, frequently sick and had to be harnessed into the bath. Her mum had to spoon-feed her at meal times.

With ME largely viewed back then as a psychological condition, Katharine was admitted to a psychiatric ward in Kensington for six months to be treated.

"I'm still emotionally scarred by the experience," explained Katharine. "It was terrible. They put me in a ward with an 11-year-old girl who had been raped and was suicidal. There were times when I had to talk her out of killing herself.

"I don't think I should have been there. The psychiatrist believed that I actually wanted to be ill, that it was all in my head. They forced me to walk even though I physically couldn't. It was torturous."

Although the public perception of ME has come a long way since the days of being termed 'yuppie flu', the medical world is still divided over how it should be treated.

Despite the World Health Organisation officially labelling it as a neurological condition, followers of the prominent doctor Simon Wessely, of King's College London, still believe psychiatric treatment should be used when dealing with those who sport symptoms of ME.

"Historically, the medical world has virtually denied all reality of ME it has never really existed. There are still divisions now, despite all that has happened, over whether it is physical or psychological," said Dr Speight. All I can say is that I'm a paediatrician who deals with young children who are completely normal psychologically yet still have the physical conditions of ME. I've seen enough to believe it is genuine."

In a bid to fund research, Katharine's father Simon will be climbing Ben Nevis for the ME Association from September 24-26. He aims to raise £15,000 after being spurred on by the lack of cash being put into the condition.

After this, Katharine even talks of setting up her own charity with friends to look further into ME, one of her many ambitions. After achieving eight A grades at GCSE level despite being moved from school to school during her teenage years and three As at AS level, she is also planning to study for her A levels in the near future.

She hopes one day she will able to see other countries, to move away from the confines of her home and to experience university life.

But, above everything else, she hopes to see the day when the dark cloud will finally depart, and the world can become a brighter place as a result.

If you would like to help with the Ben Nevis climb to fund research into ME, send a cheque made payable to the ME Association to Simon Wener, 136 Woodville Road, Barnet, EN5 5NS.

For more information on ME, visit www.meassociation.org.uk or www.ayme.org