The hidden impact of migraine in women

Since the age of eight, Antonia Cancino’s days have been governed by the chronic migraine from which she suffers. , a shooting pain that affects the right side of the head and is usually accompanied by vision problems, sensitivity to smells and nausea. Migraine is diagnosed as chronic when people have more than 15 episodes per month, which the 31-year-old journalist describes as a real “Russian roulette” which conditions your routine : “You never know how you will wake up. And if you wake up fine, you might have a headache during the day,” says Cancino. After the diagnosis, her life became a parade of neurologists and new treatments to find a solution that would make the symptoms more bearable.

Migraine, even when not chronic, has a direct impact on all areas of life, including mental health. Because even if 12.5% ​​of the population suffers from it, this pathology is surrounded by misinformation and stigma.

We have not yet understood – say those who suffer from it regularly – that Migraine is more than just a headache. That the pain is accompanied by nausea, vomiting, fatigue, extreme sensitivity and that an episode can last hours or days. Which is as disabling as other illnesses considered more serious.

“It’s a very lonely road. In work spaces, we don’t dare say it because people don’t feel it as a real illness, do not understand. And socially, it’s worse. If you can’t make a commitment, it’s very difficult to communicate it. People often think it’s an excuse or that they just don’t want to go,” says Cancino.

In November 2022, Cancino founded the The Migraine Club platform , a sort of haven where people like her share stories, advice and recommend doctors and treatments. What started as an Instagram account is now looking to become a foundation to advocate for rights in the healthcare system.

Many of its members are women , who are three times more likely to suffer from migraines than men. Even among women aged 18 to 49, migraine is the leading cause of disability worldwide.

“I had been with the same neurologist for five years when I left the Club and she told me not to get discouraged, that there were more people like me. But I have never seen these people, we all carry this problem within us. That’s why I decided to create a safe space and Recognizing myself in others through the experiences they share has been healing. account.

It’s just a headache. It has to do with your lifestyle. It’s stress. You exaggerate. It’s just an excuse. It’s hormonal. It’s a woman’s disease. These are just some of the comments people with migraines usually receive, according to a study by the European Migraine and Headache Alliance (EMHA), which found that Migraineurs feel discriminated against in all aspects of their daily lives.

The research, which brought together the experiences of 4,000 people with and without the condition, concluded that There is a stigma around migraine which leads those who suffer from it to perceive negative, contemptuous or intolerant attitudes.

It exists a general lack of understanding on the subject.

To give an example of the results, 26% of respondents who do not suffer from migraine believe that it is just a severe headache. Consequently, many who suffer from it do not see a doctor because they are ashamed or for not wanting to feel judged.

“In recent years, much progress has been made in the scientific world and in the world of migraine treatment, but There has been very little progress in the social and political perception of the impact of this disease. “, explains Elena Ruiz de la Torre, executive director of EMHA.

Nelson Barrientos, a neurologist specializing in the subject, explains that socially Headaches and migraines are seen as an excuse to avoid something . “This is a paradigm that we must break. It is believed to be used to avoid sex, to avoid work. The interpretation that is always given is unfavorable for migraine sufferers,” he comments.

In the case of women, headaches are often downplayed – both socially and medically. because they are treated as symptoms of the cycle.

“Both boys and girls can start having migraines as early as age five, but When the first period occurs, the number of attacks in women increases more than in men and this remains the case. The first breakup happens because of reproductive hormones, Barrientos explains.

It is precisely this hormonal component which means that this pathology is often neglected. As with other conditions like endometriosis, headaches are thought to be part of what it means to be a woman, although their causes are varied.

As Ruiz de la Torre explains, migraine is often included in “reproductive cycle pain pack” of women, its causes and possible treatments are not analyzed in depth.

“They told me everything. Since then, when I had children, my migraines would disappear, until they became a psychological problem. They also told me that this is something that must happen to women, because of hormones,” Cancino explains.

These prejudices, explains Ruiz de la Torre, They are present in society, among patients themselves and in the medical sector, which creates a vicious circle . “People do not consult because they consider that it is not necessary since it is not a serious illness. On the other hand, many people have gone to the doctor and been told that they need to learn to live with pain because it will happen to them for the rest of their lives. “Some women are told: get pregnant and it will go away,” she explains.

Because it is not a fatal disease, he adds, it is often downplayed. “But this deprives many people of a normal life. Depending on the severity, it can totally affect every aspect of your life,” he adds. The expert points out that one of the characteristics of migraine is that the symptoms worsen with movement, making it disabling.

Last year, the Migraine Club launched an online survey in which its members were asked how many days in 2023 they had lost to the disease. Around 1,000 people participated and More than 50% reported losing at least 50 productive days due to migraine symptoms. These data are supported by the World Health Organization: it is the eighth most disabling disease in terms of days of lost capacity per years lived.

Additionally, those with very severe symptoms end up isolating themselves, which can trigger depression and other mental health disorders.

“The quality of life is a disaster. A person who suffers from migraines is someone who has problems with their partner and distress to their family. Her friends don’t invite her anywhere anymore because she always says no. He feels guilty and begins to isolate himself. It influences everything and, as a general rule, it’s more depressive and distressing,” says Barrientos.

As Ruiz de la Torre explains, in recent years, effective treatments have been developed to make migraines bearable. Many of them, he explains, are preventative – this is the main thing – and they must be consumed for a long time and prescribed by a specialist.

But for Barrientos, The problem in Chile is that there are very few specialists trained in migraine and headaches. . And on the other hand, general practitioners do not have adequate training on this subject. “We are trying to expand the academic programs, but doctors learn more or less two theoretical courses on headaches during their years of study. In Latin America, we don’t really realize that it’s a subject that needs to be taught well,” he says.

The expert recommends seeing a doctor when you have more than two to four attacks per month. For those who experience few episodes, treatment is relatively simple and inexpensive, but for chronic migraine sufferers, treatments are very expensive.

“I have been fortunate to be able to access at least two of the three newer treatments – monoclonal injections and Botox – but their effectiveness will depend on each person. You have to try and they are extremely expensive,” says Cancino.

Both specialists call for not self-medicating with painkillers, which is very common among those who suffer from headaches. . “When a person self-medicates, they end up creating a cycle in the brain that leads to a situation that is even more difficult to treat,” says Ruiz de la Torre.