Gisela Soroka is 42 years old, a mother of three, and has lived with chronic pain for 19 years. It was in the summer of 2018, after 15 years of pilgrimages between public and private medical consultations, when she was able to put a name to her suffering: fibromyalgia. A year and a half later, in December 2019, she would also be diagnosed with Sjögren’s syndrome, a disease that causes joint pain, fatigue, dry eyes, insomnia and mental fog. During all those years marked by pain and misunderstanding on the part of many health professionals who treated her, the emotional impact was added to her physical symptoms. “I stopped visiting doctors for many years because instead of doing tests, they made judgments, I would leave the consultations crying and I decided that I did not want a diagnosis, if that was going to be the way,” she says.
But what is it like to mother with chronic pain? How is the day to day of a mother with this disease? “Intense”, according to Gisela, and she breaks a spear in favor of her maternal experience because, “despite the pain”, her motherhood has been a source of happiness for her that has even alleviated part of the pain she suffers.
According to Antonio Collado, president of the Spanish Society of Fibromyalgia and Chronic Fatigue Syndrome (SEFIFAC) and coordinator of the Fibromyalgia Unit at Hospital Clínic Barcelona, the period of child-rearing being one of the “most active phases with the greatest physical load and emotional” in the lives of women, is “where there is an increased risk of worsening of the disease”. For this reason, it underlines the importance of guaranteeing “early diagnoses, acting on functional patterns based on the persistence of activity, self-demand and high demands”, in all the factors that generate a situation of work and family stress of raising children. women who suffer from it.
In In Spain, fibromyalgia and chronic fatigue affect about 1.5 million people, of which a large majority are women. Specifically, according to the American College of Rhematology (ACR, 1990), the proportion of patients is nine women versus one man. It seems clear that fibromyalgia and chronic fatigue have a female face and, consequently, are determined by gender bias in medicine. But what is fibromyalgia and how does the disease affect women who have children? Fibromyalgia is a disease recognized by the World Health Organization since 1992 that constitutes one of the most representative situations of chronic pain in the population, as well as one of the most current health problems in developing countries.
Gisela Soroka’s first symptoms emerged in 2003, when she was immersed in the postpartum period of her first daughter. Later, she had two more children. “With the older ones she was younger and could still do things, but with the little one, she was very limited,” she explains. Actions such as taking him to school, picking him up, making him dinner, going to the park or simply playing with him are realities that she cannot carry out. “This is very hard, because I feel that I am not a mother.” Soroko explains that her older daughters take on chores and are used to going to her bed to tell her about her. “They have it built in, but the little one doesn’t understand that mom is always tired”.
The abandonment of the health system
But do women who suffer from chronic pain feel accompanied? Gisela claims to have felt abandoned and to be paying the consequences of the lack of dignity in her care. “I have been medicated with beta-blockers by my family doctor for two years, he prescribed them to me in an online consultation and without seeing me, and I am still waiting for them to call me from cardiology to do the review,” she says. Desperate for not finding a treatment and attention to match, she has finally chosen to become a private mutual “so they can see and speed up the studies” that she has been asking for in the public for years.
Regarding the lack of adequate attention from the health system, Antonio Collado assures that “many professionals have traditionally expressed their lack of belief in the disease, as if human biology were a matter of faith”, in part due to the lack of specific training on the diagnosis and treatment of this disease. In this sense, he assures that one of the main challenges is that the Spanish Society of Fibromyalgia and Chronic Fatigue Syndrome (SEFIFAC), together with other scientific and medical societies, promote and guarantee training and knowledge about it.
And it goes further: it maintains that the delay in the diagnosis of the disease is present in all countries and in Spain, an epidemiological study carried out with patients diagnosed and controlled in Primary Care centers estimated it at six years between the start of the symptoms and establishment of the diagnosis. “This is absolutely harmful in the treatment of the disease and its consequences,” says the coordinator of the Fibromyalgia Unit of the Hospital Clínic de Barcelona. A figure that is far from the 15 years it took Gisela to find out about her diagnosis.
Towards a multidisciplinary treatment
As far as treatment is concerned, there is currently no cure for the disease, but there are treatments that allow symptoms to be controlled. In any case, according to Collado “the treatment must be multidisciplinary: pharmacological, with cognitive-behavioral therapy for adaptation and also for regional comorbidities with pain treatment procedures”, he explains.
A thesis shared by the pharmacist, nutritionist and psychoneuroimmunoendocrine (PNIE) María Real, who works with patients with chronic and autoimmune diseases. From her point of view, the problem is that conventional medicine cannot deal with these types of diseases because of a lack of resources. “Nutrition is very important in this disease, because many people diagnosed with fibromyalgia have non-celiac gluten sensitivity,” for example.
In addition, he points out that although the cause of chronic pain may be multifactorial, there is a relationship between gastrointestinal problems and chronic pain. “Many patients have inflammation in their body, and our diet has a big influence on inflammation,” he explains. Therefore, taking care of the diet is also fundamental in the treatment of these diseases.