Researchers report that being diagnosed with fibromyalgia is not helpful for patients in the long run.
Fibromyalgia is a poorly understood condition and sufferers often face symptoms such as pain, fatigue, and cognitive difficulties for years before being diagnosed. It can be so disabling that patients often have to quit their jobs and withdraw from their usual social activities. A recent study in fact found that fibromyalgia is harder to cope with than other rheumatic conditions such as rheumatoid arthritis, osteoarthritis, and lupus.
You may think then that finally getting a diagnosis would be a positive turning point for these unfortunate individuals. A recent study however suggests that this is often not the case and the relief provided by a diagnosis is only temporary.
Researchers from the Department of Neurology, Buskerud Hospital Trust in Norway conducted interviews with eleven female fibromyalgia patients recruited from two local support groups. The purpose of the interviews was to obtain descriptions of the patient's experiences of the process of being diagnosed with fibromyalgia and the consequences of this diagnosis.
As could be expected many of the women reported having suffered for years before being diagnosed. Most reported feeling a sense of relief when they were finally diagnosed. Some also said that the diagnosis "legitimized their symptoms as a disease", and others felt that is was better to suffer from fibromyalgia than what are considered more serious diseases.
This relief was evident in those close to the patients as well. One woman said: "When I came home they were all relieved, and my husband said okay then we know that for sure. They were happy my illness was not something I would die from, because that is what they thought."
As time passed the patients reported feeling increasing sadness and despair as the reality of limited treatment options became apparent. They also reported that a lack of understanding and respect among doctors and people in general only worsened these feelings.
Another group of researchers recently interviewed doctors and found that they ranked fibromyalgia as one of the least "prestigious" diseases. This is backed up by the patient's experiences in this study. Some said that their doctor had classified fibromyalgia as just a word and associated it with hysterical women. One patient said that a rheumatologist had called it a 'fashion disorder'.
The patient's reported fairing no better with family, friends, and coworkers. One woman said: "It is no use telling people you have fibromyalgia since they all seem to have something similar. People have come to me and said they have a touch of it, too." Others explained that when they told people what was wrong they would say "is that the only thing?"
As a result of the misunderstandings and poor treatment that fibromyalgia patients receive, many opt to keep the diagnosis to themselves. Adapting to life with the condition can therefore be a very lonely experience.
The researchers concluded that: "A diagnosis may be significant when it provides the road to relief or legitimizes the patient's problems. The social and medical meaning of the Fibromyalgia diagnosis appears to be more complex. Our findings propose that the diagnosis was hardly helpful for these patients."
The study is published in the December issue of the Scandinavian Journal of Primary Healthcare.
Source: Scandinavian Journal of Primary Health Care. 2007 Dec;25(4):250- 5. PMID: 18041660, by Undeland M, Malterud K. Department of Neurology, Buskerud Hospital Trust, Norway.