When the doctor says, it’s all just imagination, that’s medical gaslighting

“When I told him my complaints, he looked at me strangely,” she says. The examination revealed no abnormalities. “They said I was healthy and not to worry.” But neither worries nor symptoms can be eliminated at the touch of a button. Should she be happy even if she doesn’t feel better? Is she healthy just because the doctor says so?

No one is talking about Long Covid at the moment. However, it is known that the course of Corona can be long. After a few more months, Zaugg’s hands were sometimes spotted red and sometimes blue-violet.

Desperate, she makes an appointment at a new practice. “After a quick look the doctor said it was normal. When I defended myself, she got angry: she already knew what she was doing – I was not allowed to interrupt her. You don’t talk to patients like that!” Zaugg should know, she’s a psychologist.

Medical Gaslighting: When you are not taken seriously

What she experiences is not an isolated incident. Patients have to repeatedly explain and justify themselves, and symptoms are ignored and downplayed. The phenomenon is well known, but has a new name: medical gaslighting.

‘Gaslighting’ is a psychological term and means interrogating a person – until he no longer trusts his own thoughts, perceptions and memories. The unusual name goes back to “Gas Light,” a 1938 play: a man secretly turns down the gaslight in the house, claiming his wife is only imagining the flickering. This is how he manipulates her and creates a dependency.

Gaslighting has become a commonplace concept in recent years and was even named the American word of the year in 2022. Searches increased 1,740 percent from the previous year, the Merriam-Webster dictionary reported. It is not a single event that is responsible, but rather its widespread use: Gaslighting can describe a relationship between individuals, but also structural manipulation – by the media, those in power, politicians.

Prejudices and time pressure are the cause of this

Now doctors are also being pilloried. Justifiably? No, because very few people consciously behave aggressively. However, internalized biases cause them to treat patients differently. Research shows that women, people of color, LGBTQI+ people, overweight people and seniors often suffer from medical gaslighting.

“Our medical system is focused on standardization,” explains Susanne Gedamke of patient organization SPO. “While this helps in many ways, a specialist should notice if something deviates from the standard. She should not try to force patients into a pattern.”

Another problem: the highly economical healthcare system requires that consultation hours be as efficient as possible. Specialists are under time pressure and there is little time for explanation. However, patients often come to the consultation with questions or ideas, because they have googled possible diagnoses in advance.

Google brought them to Long Covid

For 40 percent of the Swiss population, Google is the first point of contact for health questions, and 80 percent receive information about health topics online. This is evident from research commissioned by Sanitas.

The Internet is therefore quickly accused of turning healthy people into sick people. Anyone looking for a ‘sore tongue’ will catch tuberculosis or syphilis early on – although a citrus fruit could be to blame. If this person asks for a biopsy, the doctor will most likely respond with caution. “It happens that the doctor and the patient have different ideas about the examination and diagnosis. This needs to be addressed, but it is not the same as medical gaslighting,” says Yvonne Gilli (66), president of the FMH Medical Association.

Anyone who fundamentally demonizes the Internet is making it too easy for themselves. Dr. Although Google can lead to problems, surprisingly often it can also be the solution. Patients network on forums and social media and share negative experiences. A community is created in which people support each other, demand rights and denounce abuses. This was the only way medical gaslighting entered the social discussion.

Simona Zaugg first heard about small fiber neuropathy (SFN), also called small fiber neuropathy, at the patient organization Long Covid Switzerland. The disease is caused by damage to the smallest nerve fibers. They are central to the sensation of heat, cold and pain. The autonomic nervous system, which controls the function of internal organs, is also commonly affected. Zaugg will soon talk to those affected via Facebook and WhatsApp. They refer her to the Cantonal Hospital of Lucerne, where one of the few Swiss specialists works.

Finally diagnosed after three years

In March 2023, the suspicion was confirmed: she suffers from small fiber neuropathy. In Switzerland, 146 out of 100,000 people are affected. Making the diagnosis is complex: the symptoms are little known and the causes can be diverse. Examples include autoimmune diseases, metabolic disorders or side effects of medications.

In Zaugg’s immune system is directed against your own body. “It probably has to do with my genetics: people with specific mutations may be more susceptible,” she says. Studies indicate a link between small fiber neuropathy and Long Covid. No wonder: Long Covid attacks the nervous system. “Without others affected and social media, I might not know this today.”

Conversations at eye level are mandatory

Many sick people find specialists in the same way. A name that appears often: Maja Strasser. Solothurn’s neurologist has been working intensively with Long Covid for two years – a disease in which medical gaslighting is particularly common. Strasser is known for her empathetic approach. “What I do is nothing special: I teach myself, take my time and research thoroughly,” she waves off.

A conversation at eye level is essential. “Some patients come up with ideas that we discuss. I ask a lot of other people: what is their daily life like? When do you get up? How often do you have the strength to shower? The exchange frees sick people from their passive role and gives them self-confidence again. Strasser provides further training and publishes her therapy regimen online so that other physicians can benefit from it.

Patients as subjects rather than objects

“Professionals must be made aware as early as possible that patients are subjects and not objects. “It is a matter of attitude and must be put into practice,” says the patient organization. The medical association FMH agrees with this statement. Professional communication must necessarily be the focus of training and further education.

Simona Zaugg is no longer bothered by her symptoms. The Zurich native is informed, persistent and demanding. “I recently asked my doctor about a therapy that is achieving good results in the US. He knew her, but was careful because health insurance probably wouldn’t cover the costs.” She doesn’t let that stop her, she doesn’t have time for it. Zaugg is on the verge of stomach paralysis.

She wants to fight – and is counting on support from her legal expenses insurance. ‘I haven’t given up hope. With proper treatment, small fiber neuropathy can be stopped and the nerves can recover. That is my goal.” A life without ants.