The stigma in fibromyalgia

By Dr. Javier Rivera 

(Para leerlo en español pincha aquí)

Some doctors do not believe in fibromyalgia; others, although they are aware that it exists, do not diagnose it; and some more, displaying an important lack of knowledge, say that there is no treatment for it.

The patient’s family and friends are irritated by the situation because they do not understand that she can feel so bad and be permanently limited in all kinds of daily life activities.

In the workplace, frequent sick leave clearly harms her future employment and, furthermore, is not usually taken into account when granting disability.

All this makes the fibromyalgia patient become a stigmatized person.

Fibromyalgia is not the first disease that has been stigmatized throughout history. Other diseases have also been degraded, feared and even hated by society, so that the patients who suffer from them become marginalized people and on some occasions, they have even been literally removed from society. The reasons why a disease is stigmatized have been diverse. Let’s look at some examples:

Long ago –not as long as one might think–, there were people possessed by the devil. They were schizophrenic, psychotic, oligophrenic or demented patients, who frightened society with their clinical manifestations. Of course, it was unknown what caused the illness and then, following a purely religious criterion –very common in those times– the ecclesiastical authorities decided that the devil had invaded those souls causing their illness. In this case, the stigma had been caused by a religious reason but, against all logic, it worked like everyone else, that is, marginalizing the patient to keep him isolated from society.

Leprosy has been another stigmatized disease throughout history, also for religious reasons. This case was almost worse than the previous one because the sick person, on top of that, was considered a sinner and had been punished by God with the disease. Solution: remove him from society, and the farther the better. For your information, there were some leper colonies located on islands so far away that the patient had no chance of returning to society.

There are also diseases stigmatized for reasons of a moral nature, such as alcoholism, drug addiction, AIDS, syphilis and other sexually transmitted diseases, for example. It is not only that they are people who are “harmful to society” – which of course not all of them are – but that they are also judged morally and are considered morally weak according to the norms of our society. The end result is the same and they become marginalized people.

There are other diseases that endanger society and, therefore, it is responsible for isolating those who suffer from them following a criterion, let’s call it, social. In general, this is the case of infectious diseases with a high risk of contagion, such as the pest, where entire cities were closed –literally speaking– so that they would not infect the rest of the country; or tuberculosis, when patients were confined in exclusive sanatoriums for them; or more recently, viral infections such as Ebola with a very high mortality rate that stigmatizes patients to incredible limits; as we could see in Madrid a few years ago on the occasion of a few cases that, by the way, were infected by helping others.

And, what about fibromyalgia? What are the reasons why these patients are stigmatized? Some women with fibromyalgia believe that there is a criterion of misogyny in this marginalization, because they are women in 90% of cases, and they believe that if it were a men’s disease there would be more means to combat it and it would be less stigmatized. Perhaps they are right.

There may also be political heath care criteria, because they are patients with high rates of incapacity for work that could jeopardize the economic system of social benefits if all of them were recognized for their limitations in the workplace. In this sense, the lack of sensitivity towards vulnerable people easily stigmatizes these patients.

In short, the criteria with which these diseases have previously been stigmatized are grotesque and primitive at the present time and it is time to definitively set them aside. We must think that a patient does not choose her illness and is not guilty of suffering from it and, therefore, society must do everything possible to improve their situation by eliminating any assessment criteria that are not strictly health.

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2 Comentarios

  1. Monika

    Gracias Dr. Rivera por ayudarnos a visibilizar está enfermedad. Es de gran ayuda que alguien con credibilidad y criterio profesional difunda está información. Es cierto que aún hay gente que nos considera farsantes, quejicas, hipocondrícas, vagas o neuróticas; piensan que todo es psicológico y nuestras alteraciones y dolores son inventados. Lo entiendo, pues nuestra apariencia externa suele ser buena, parece que no tenemos nada; aseguro que el dolor, la depresión, el cansancio y el sueño que no proporciona descanso, son reales

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  2. Monika

    Gracias a usted y su experiencia en fibromialgia, tuve la suerte de recibir el diagnóstico la primera vez que visité su consulta. No tuve que rodar de un especialista a otro, lo que suele ser común como ya sabemos. Simplemente revisando mi historial clínico y escuchando cómo me sentía, usted no tuvo duda sobre lo que me pasaba

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