When 25-year-old Heather Cowen decided to write about the malady which has dogged her life since 1987, she chose the title, "The Invisible Illness''.

It is, she feels, the perfect description of a condition that affects about five million people in North America and an estimated 3,000 to 5,000 people in Bermuda. The chronic musculo-skeletal disorder is called Fibromyalgia Syndrome (FMS), more generally known by its former name of fibrositis.

Frustrated by the fact that comparatively little is known about the disorder -- for which there is no permanent cure -- and the devastating effect it has on the sufferer, Ms Cowen came to the conclusion she should write about her own experience.

This began when Ms Cowen -- daughter of hotelier Mr. W. A. (Toppy) Cowen -- was just 17. The teenager who was hoping to qualify for Bermuda's Olympic equestrian team, was thrown from her horse. A fractured vertebrae led to hospitalisation and a spell of physiotherapy. Believing herself to be fit again, she was thrown from her horse a second time. She has lived in chronic pain ever since. But it took seven years for her condition to be diagnosed -- a condition to which Ms Cowen believes many may be predisposed, and which might be triggered by a traumatic event such as a severe fall.

With three separate hospitalisations over a period of seven months, Heather Cowen's poor school grades forced her to finish Canada's grade 13 through correspondence and night school. Having achieved that, she suffered what she realises now was a severe flare-up of the then undiagnosed illness. At the time, however, everyone was at a loss to understand what was wrong with her.

One of Canada's leading orthopaedic surgeons had concluded her best course was to see a psychiatrist, as he could find no explanation for what was now crippling pain.

Realising that she would have to abandon her dream of competitive horse-riding, she compromised, planning a career in coaching. Two more debilitating riding accidents, one of which left her with a concussion, were not improved by an ugly mugging incident in Canada when she was punched in the face. Ms Cowen decided now to follow her father's profession and enrolled at Humber College to study hotel and restaurant management. During a five-month internship in Japan, she was involved in a minor skiing accident, which again, left her in terrible pain.

Back in Toronto, she transferred to George Brown College, but grinding hip pain led her to a rheumatologist. After developing a peptic ulcer, her digestive system has never recovered, but five months later, it was a Bermuda doctor who diagnosed celiac disease -- considered to be one of the side-effects of FMS.

It was not until March of last year that she was finally diagnosed with FMS.

As she relates in her book, however, this diagnosis has led to even more problems.

"I am still having an ongoing battle with the insurance companies here,'' she says from her home in Canada. "The minute I told them that my illness finally had a name, they cast me off! I was eventually reinstated through my company's health plan, but they are still fighting me.'' This is one of the reasons why Ms Cowen decided to write her story. "I feel that had I been diagnosed earlier, the effects could have been minimised. As it was, seven years of waiting meant that the ill health spiralled and, at the same time, the fear gets worse and worse and gradually, this leads to `fragile' lives, and the sleep deprivation which, in turn, results in chronic fatigue.'' The biggest problem of all, she says, is that people often cannot see physical evidence of the pain, and doctors cannot diagnose through blood tests, X-rays or other tests to scientifically prove the existence of FMS.

Although she graduated with honours in hotel management, Ms Cowen has decided to pursue a career in aromatherapy -- one of the treatments which has been beneficial to her condition. Increasingly, she says, she is turning to the holistic aspect of medicine, admitting her faith in most of the medical profession has been sorely tried.

She does, however, acknowledge the help and encouragement of Dr. Peter Parker of Mt. Sinai Hospital in Toronto, who has written the Foreword to her book. In it, he draws attention to the difficulties encountered by Ms Cowen and thousands like her, who have to convince authorities (and friends!) that she is officially disabled -- even though there is no sign of a wheelchair, or at first glance, any physical impairment. Try and imagine, he writes, having someone tell you that "you look great'' when you are suffering from this "invisible disability''.

"When I first decided to write this book, it was my intention to let FMS patients know more about the illness in order to help themselves, but I found there are, in fact, several good books on the subject.'' I realised that one of the most difficult aspects is not so much the pain -- though that can be bad enough -- but trying to make those who do not have FMS understand how this affects my entire life,'' explains Ms Cowen.

One of the problems is that the physical symptoms and prevailing conditions do vary enormously with each individual. A partial list may include muscle spasms, bruising, dizziness, numbness and tingling, skin disorders, hair loss, headaches, swollen glands and stiffness and eye pain. These physical ailments are often accompanied by mental and emotional problems, such as anxiety and confusion, panic attacks, word mix-ups and difficulty in maintaining concentration.

"One of the common misconceptions is that FMS is often attributed to rheumatism and associated with older people. In some ways it is like the 'flu, possibly a virus, possibly an immune system attack.'' Mrs. Saundra Cowen, Heather's mother, hopes her daughter will return home for a visit soon, and explore the possibility of setting up a support group for those diagnosed with FMS.

"Liz Boden of The Nurses Practice and Ann Ingham at Dr. Caroline Hammond's Sports Practice are keeping us advised of the growing numbers of people being diagnosed here in Bermuda. Heather has been on the board of the Ontario Fibromyalgia Association.'' According to Ms Cowen, three to five percent of the population in Canada suffer from FMS. At present, there are no figures available for Bermuda but, as Ms Cowen points out, there are almost certainly people who have the symptoms but have not been diagnosed.

These days, Ms Cowen writes, some of her symptoms have improved, some have worsened, so there is no real "ending'' to her book.

"I have a new perspective on life -- to play the hand I have been dealt. I have plenty to be grateful for and I am determined not to let this illness control me. I am confident that we will have answers one day. Until then ...

life goes on -- one day at a time!'' "The Invisible Disability'' by Heather Cowen is on sale at The Book Mart at a cost of $5. Anyone who wishes to find out more about FMS, or who is interested in joining a support group, is invited to telephone Mrs. Cowen at 293-4561.

Ms Heather Cowen