Invisible diseases, patients are alone and ask Dr. Google
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«Always tired, in pain, everything had become difficult to manage, physically, but sometimes also mentally. For the doctors it was all due to stress, which then one becomes convinced of being stressed, depressed and even hypochondriac. The exams are all good, what else can it be if not a mental problem? […] I wasn't crazy, it was fibromyalgia».
It is one of the many testimonies of patients suffering from fibromyalgia reported in the recent study “Invisible diseases. The barriers of chronicity” of the Tuscan Coordination of self-help groups, published in the quarterly Briciole. (1)
It is a journey into fibromyalgia and the invisible diseases that afflict patients who "can't be seen", because they don't have a timely diagnosis or receive it after an endless course of medical tests. The dossier gives voice to the testimonies of patients and doctors, lawyers and psychologists-psychotherapists involved in the difficult management of these pathologies, which recall the need for medical, psychological and legal assistance. One of the most interesting aspects that emerges, in addition to the testimonies of women suffering from fibromyalgia, is that the search for information (and comfort) often leads to Dr. Google. Patients are looking for health, treatment and diagnosis information – or rather self-diagnosis – on the website. For so many different reasons.
Chronic pathologies and invisible diseases
The starting point is that "in our society, chronic diseases involve an enormous burden of care with high psychosocial consequences that inevitably affect health care costs".
«Insanity, depression, stress and anxiety these are just some of the diagnoses that women and men suffering from invisible pathologies have heard before arriving at a real and concrete diagnosis. Invisible diseases: incurable and/or poorly studied diseases that affect millions of people but are not yet fully recognized by the state".
The numbers. In Italy, the projections on chronicity indicate that in 2028 there will be 25 million chronically ill patients, while the multi-chronic will be 14 million. Chronic diseases are the leading cause of death almost worldwide. According to the WHO, chronic diseases cause at least 86% of deaths and 77% of the disease burden in Europe. Chronic diseases provide for the taking charge of patients in the area and continuous assistance during the course of the disease. According to data from the Higher Institute of Health as of January 2022, cited by dossier, "chronic (or non-communicable) diseases affect around 24 million people in Italy".
The fibromyalgia case
The path already complex management of a chronic disease, however, becomes an odyssey when dealing with invisible, little known and complicated pathologies, for which there are no specific tests and there is a lack of knowledge that makes it difficult to recognize and diagnose them by the doctors themselves.
Il dossier part of the case of fibromyalgia, recognized by the WHO in 1992 but still an invisible disease “par excellence”. These diseases are often relegated to “psychosomatic disorders”. Yet fibromyalgia, the study highlights, affects about 2 million Italians, making it the second rheumatic disease in terms of diffusion after osteoarthritis. We are talking about a pathology that affects more than 3% of the Italian population, especially women, but which is not recognized by the National Health Service and is sometimes labeled a "psychosomatic disease". Thus it happens that those who suffer from an invisible pathology often remain trapped in a limbo caused by the diagnostic difficulty and the uncertainty of the therapy to follow. Only in pain.
From invisible pathology a Dr Google
If the diagnosis is difficult, if you're always sick and you can't find the cause of your pain, then it also happens that patients rely on Dr. Google. “People suffering from chronic conditions often find themselves, in the first place, relying on the web to self-diagnose the disease”Says the dossier. And from here, among the contributions present in the paper, a chapter dedicated to Cyberchondria - never rely on Dr. Google, signed by Rosaria Mastronardo and Tiziana Lazzeri.
«About cyberchondria Wikipedia reads: “Cyberchondria is a neologism, derived from the union of the words cyber and hypochondria, which refers to the unfounded concerns of a patient, deriving from internet searches, towards common symptoms. Cyberchondriasis is a growing concern among healthcare professionals, as patients can now research any disease and all associated symptoms by consulting the internet. This can lead the patient to experience a state of medical anxiety and to hinder the doctor's diagnosis by exaggerating, reducing or eliminating a set of symptoms in support of their self-diagnosis.
So it begins the contribution, which tries to explain the reasons why invisible patients seek answers and diagnoses online. The danger of searching for medical information on Google is certainly that of finding "inaccurate, too generalized and often harmful information". But the phenomenon is worthy of note because many chronic and rare patients are heavy users of blogs and social media, because in this way they manage to enter into relationships with people suffering from the same pathology - in search of some cure available somewhere in the world .
Why are you looking for online?
At the basis of the research of medical information online a Dr. Google there is therefore only ease of access to website, highlights the contribution, written by two authors who work in fibromyalgia self-help groups.
«There is certainly more, especially when the research is carried out by a chronically ill person. It is not easy to accept a chronic disease: one always hopes that the doctor has made the wrong diagnosis, one always hopes for a drug that finally works miracles, one always hopes for an innovative diagnostic test to undergo, yet another 'hopefully' in scientific research perhaps carried out in a country on the other side of the earth that your doctor does not know about».
This counts even more for invisible chronic diseases. Patients with fibromyalgia roam the net looking for answers for a variety of reasons: because they don't receive adequate answers from general practitioners; why you only receive a list of medications and not information on how to manage the disease; because there are very few reference centers for these types of diseases, even in virtuous regions that have diagnostic therapeutic care pathways.
In fact they are sick invisible and alone. They discover that the disease is chronic but that there is no cure and find themselves wandering among the specialists with ever diminishing hopes.
But you can't even pin the "blame" on them to look for online answers they can't find from specialists, warn the authors.
«Often, however, the chronically ill are left alone, at the mercy of themselves, and therefore the search on the web, in the virtual world, is triggered, where the patient nourishes the hope of finding something that can make one feel good, that can give hope. All of this is also dangerous, because unscrupulous people could take advantage and take advantage of patients in difficulty who 'roam' the net in search of an answer or answers that unfortunately don't exist yet. For years, patients suffering from chronic diseases have had various labels sewn on them unjustly, let's avoid branding them even as "cyberchondriacs"».
Sabrina Bergamini
Note
(1) The invisible diseases. The barriers of chronicity https://www.cesvot.it/documentazione/le-malattie-invisibili
