FIBROMYALGIA, A HIDDEN DISABILITY

Written by Deborah A. Barrett

Edited by Fibromyalgia Support N I

" You look fine" these words are usually complimentary. At times they can be reassuring, however, they can cause confused feelings when someone is silently suffering. This problem is not exclusive to Fibromyalgia, these can cross over to other conditions with controversial diagnosis and uncertain cause, such as Chronic Fatigue Syndrome, Post Traumatic Disorder, and Premenstrual Syndrome.

The Visibility of Fibromyalgia

The visibility of Fibromyalgia is increasing. Those who developed Fibromyalgia in recent times are "luckier" than those who had to bite the bullet for years whilst being told they were perfectly healthy. Fibromyalgia is now understood to be the most common cause of chronic musculoskeletal pain. One of the most significant  contributions to this change was the creation of diagnosis by the American Department of Rheumatology in 1990. The diagnosis rests on on an examination by a knowledgeable physician of "tender points" throughout the body. The diagnosis is made when the patient responds to a moderate palpitation at a minimum of 11 of the 18 sites. Furthermore, an international declaration in 1992 signed by medical experts from around the world and endorsed by the World Health Organisation endorsed that Fibromyalgia is "indeed a true medical problem".

Those who have Fibromyalgia will find such a statement silly. Of course they have a problem. Patients know that it is not normal to hurt from head to toe, day after day. But the official recognition of Fibromyalgia Syndrome has had an impact on the legitimacy and the visibility of their condition.

For the individual with Fibromyalgia, the first step is in making their experience visible by a proper diagnosis by a doctor. This rules out other conditions, and opens up a path for other types of treatment.

Unfortunately, it isn't unusual for people to see numerous specialists and undergo extensive tested before getting the correct diagnosis. For a person searching for a name for what is wrong with them is depressing and also lead them to question their own sanity.

As Fibromyalgia and its symptoms are widely recognised, diagnosis are being made more quickly by GPs.

How Visible is Fibromyalgia?

It is certainly more visible in public domain, in libraries, bookstores and on the Internet. Over the last 10 years dozens of self-help books have been published on Fibromyalgia, information sites and discussion groups cover the internet. Fibromyalgia has been discussed on mainstream television programmes. Support groups provide information to patients and practitioners, networking with health organisations and universities.

The Invisibility of Fibromyalgia.

Why did Fibromyalgia remain invisible for so long? . In the 1950s and 1960s in the United States, Fibromyalgia was seen as a manifestation of psychogenic rheumatism and patients were considered hysterical. Many doctors gave the name malingerer to those who complained of pain and fatigue. Even with the growing evidence of the physical reality of Fibromyalgia Syndrome, because of the gender of the patient and the virtual invisibility of the condition, resulted in non-sensitive and non-theraputic doctor-patient relationship. Fibromyalgia is seen as a women's condition. However, men with symptoms face separate issues of obtaining diagnosis. Men can be overlooked as sufferers for the diagnosis of Fibromyalgia. They also face the everyday pain and fatigue, and they struggle with the ideas of strength and independence.

There are no blood tests to confirm a diagnosis, an unclear understanding of the underlying cause, no fixed regime to cure the condition. Doctors are often frustrated by the patients multiple complaints, and poor prognosis.

Make Fibromyalgia Visible.

Fibromyalgia Support N I wants to make it visible. Our aim is to an organisation where those with Fibromyalgia can find understanding, knowledge, support and practical help in living & coping with this chronic debilitating condition.

We Support Advocate and educate to and on behalf of Fibromyalgia sufferers in Northern Ireland and beyond.