How to lessen stigma and gaslighting in the health sector

Opinion: People with certain types of health conditions are more likely than others to have their symptoms dismissed, minimised or disbelieved. These conditions are diagnosed based on the patient self-report of symptoms, where there is no definitive diagnostic test that can prove the existence of disease or demonstrate structural or dysfunctional changes in the body. These are often conditions that affect more women than men.  

Take the example of migraine disease. You probably didn’t even think it was a ‘disease’ – a disease of what? It’s actually the most common neurological disease in the world, affecting about one in seven people.

My new published research, based on the Migraine in Aotearoa New Zealand (MiANZ) survey of 530 people, found migraine patients experience similar barriers to health care as patients with other conditions, but these are compounded by stigma and lack of access to modern treatments.

Half of survey respondents reported being unable to see a health professional for migraine, most commonly a neurologist (49 percent) but also general practitioners (28 percent), other specialists (10 percent) and complementary health services (10 percent).

The most common reasons for being unable to see a health professional were being unable to get or being declined an appointment, long waiting times (particularly for primary care), and the cost.

We don’t know exactly what causes migraine, except there is a strong genetic component, and certain neurotransmitters in the brain are implicated in setting off and sustaining migraine attacks.

One reason we don’t know more about migraines is because diseases affecting women receive far less research funding than diseases affecting men. Migraine is two to three times more common in women than men and receives only a fraction of research funding that it should do, if the burden of disease is taken into account.

Lack of knowledge about a disease is at the root of stigma and bias, and that lack of research funding fuels a lack of understanding about many diseases that predominantly affect women, such as chronic fatigue syndrome, endometriosis, the mis-named polycystic ovarian syndrome, and migraine disease.

When you don’t understand the nature of a disease, or its impact, you’re more likely to take on negative beliefs or stereotypes about the people with that disease, which can lead to discriminatory behaviour.

A common stereotype of migraine is that it’s “just a headache” – so just take some paracetamol and carry on. If you don’t, you must be putting it on or using “migraine” as an excuse to get out of work or chores.

People who believe these stereotypes are more likely to judge those with migraines as weak, lazy, unreliable or even deceitful, and act accordingly.

And migraine sufferers are aware of these judgments. From the MiANZ survey, three quarters of respondents hid or minimised their migraine symptoms at least some of the time, for fear of being judged or misunderstood. As one respondent said, “I feel like I live with a made-up illness, constantly having to over-explain myself and try to convince people that it’s a real condition.” People who experience this often have more disability and a worse quality of life.

To break these stereotypes and stigma, we need more awareness that migraines are a neurological disease that affects the brain in myriad ways, causing not only severe pain but also sensory, gastrointestinal, cognitive, and emotional disturbances.

This awareness is needed not only among workplaces, families and society in general, but also among health professionals. From the MiANZ survey, 42 percent of respondents reported feeling judged or misunderstood because of their migraine disease by a health professional at least some of the time. Respondents reported experiences of being dismissed, not having symptoms taken seriously and being subjected to stereotypes.  

This type of experience can lead to “medical gaslighting”, when a health professional ignores, minimises or trivialises a patient’s symptoms, often by telling the patient that the symptoms are “all in their head” or because of stress, anxiety, or mental illness.

When gaslighting leads to symptoms not being appropriately investigated or followed-up, this not only compounds the distress caused by the original health concern but erodes trust in the health system and leaves patients without an accurate diagnosis and treatment plan.

The MiANZ survey also found that many people with migraine disease were not receiving optimal treatment. Lack of knowledge and stigma from health professionals are likely contributing factors, with only 36 percent of survey respondents rating the knowledge of GPs about migraine and its treatment as excellent or very good.

This was compounded by difficulties in seeing a GP or a specialist, because of long waiting times, cost and inability to get appointments. For better health care for migraine sufferers, we need to not only improve awareness and knowledge, tackle stereotypes and stigma, but also address the many problems in the health system that are making delayed, inaccessible and costly care the norm.

It’s worth noting that not even doctors are immune from gaslighting. A physician in New Zealand (who does not want to be named) developed a headache severe enough to wake her in the night. She was initially refused a head scan and was told her headache was likely due to work stress. However, she pushed back, insisting a scan was clinically indicated. When it was done, the scan revealed a life-threatening aneurysm in her brain. If she hadn’t insisted … well, you can imagine. We’d be short of another medical specialist and our health system would be that much worse off.