Why media portrayal of chronic illness
as psychological is so harmful
Popular media sometimes portrays people with chronic illnesses as mentally ill. The impact can have real life consequences for everyone with the same illness. It goes far beyond a few people having their feelings hurt.
Keywords: chronic illness, mental illness, psychosomatic, MCS, chemical sensitivity, electrical sensitivity, media, media portray, harm
Some media emphasize controversy, since it attracts more viewers and readers. Sensationalism simply sells better than balanced information. This provides a strong incentive to make such accusations. It can be done directly or it can be done more subtly — the effect is much the same.
The 2018 Netflix series Afflicted did it to people affected by chronic fatigue, post-Lyme syndrome, mold hypersensitivity, chemical sensitivity, electrical hypersensitivity and more.
The Guardian did it with their 2016 video and story about people with chemical sensitivity in Snowflake, Arizona.
The New Yorker did it twice in 2017. Their review of the book Girl in the Dark about a woman with extreme light sensitivity, and their fictional story Quarantine about someone with MCS, both strongly pushed the psychological view.
The television series Better Call Saul, which started in 2015, is yet another example. This one targeted electrical hypersensitivity.
This is not a new phenomenon. During the 1990s American Broadcasting Corporation (ABC) aired a series of programs dismissing chemical sensitivity as a legitimate disease. But how can these programs and articles cause real harm?
Promoting inappropriate psychiatric treatments
People with the controversial illness may seek psychiatric treatment instead of treating the real problem. They may be pressured by family members or may themselves believe their illnesses psychiatric.
People with MCS have gone to psychiatrists for years, while they kept getting sicker since the illness wasn’t addressed at all. This detour can thus be quite harmful. This writer knows two such cases. In one, the patient finally got better once she dropped the psychiatrist and found the right specialist. In the other case she continued to get worse with daily seizures. When she got the right help it was too late and she eventually committed suicide.
In the book How Doctors Think there is a case story of a person with celiac disease who was written off as a psychiatric case for 15 years. She nearly died (Groopman, 2008).
There is very little evidence that psychiatric treatments are helpful to people with these chronic illnesses (Gibson, 2003; Hauge, 2015).
Family members who come to see the illness as purely psychiatric can cause a lot of trouble. People with chronic illness need family support more than ever, and these programs can make family members feel justified not to help out or even actively sabotage things. The result is too often a broken family and a broken home.
Staff in nursing homes, clinics, hospitals and businesses may deny the sick people the accommodations they need to be there.
Bosses may feel justified refusing accommodations at work, such as increased ventilation or a desk away from perfumed co-workers and next to a window that can be opened.
The sick person may be forced to resign with the resulting loss of income, health insurance and pension. Finding another job will be very difficult.
There are many horror stories from all these situations.
People with chronic illnesses can be subjected to snide remarks and harassment by co-workers, bosses and others. People who have to wear a respirator to enter stores and other public places have been accosted by strangers.
People can be surprisingly intolerant of those they see as different. The same suspicion and hostility against people of other races, religions and cultures can also be directed at those with disabilities that are perceived as illegitimate.
Inappropriate health care for other ailments
Medical schools do not teach about some of these contested illnesses. Physicians in specialties that do not treat these illnesses may have only head about them through popular media. A wealth of research shows that physicians, such as internists, surgeons and gynecologists, tend to give short shrift to patients who are perceived as “psychiatric” (Groopman, 2008).
For this reason, some patients avoid telling the doctor about their illness, thus depriving the doctor of the full picture.
Without funding for research, the understanding of the illnesses will not improve. Research is needed to dispel the controversy. But the people who decide on what research to fund tend to avoid funding controversial projects – as Scientific American says, they are “allergic to risky ideas” (Ioannidis, 2018). And if “everybody” thinks it’s “all in their head” anyway, why waste money?
There are plenty of a worthy research projects in fields that are not controversial, so why take a chance? It is easy to think that way. Painting an illness as illegitimate inhibits funding for research to demonstrate that it is in fact legit.
Medical insurance and disability
People with controversial illnesses have great difficulty getting insurance to pay for medical expenses, and qualify for disability payments. They may find themselves with no income and unable to afford any health care.
Homelessness, depression, suicide
Unable to work, sick and financially destitute, with little or no support from family or social services, some patients have to live in cars, vans or garden sheds. It can be a steep decline from a middle-class life to life at the bottom in just a few years as the savings run out (Gibson, 2005).
Depression and other mental health problems often follow as a result of the ordeal, perhaps reinforcing the opinion that it was all mental to start with. Suicide can be the final result.
Young doctors choose other fields
When young doctors need to choose their specialty it is much more enticing to choose a field without controversy. Many doctors essentially follow a cookbook of medical guidelines in the well-established fields.1 The health insurance pays reliably, the work is respectable, the patients cause no trouble, and if they do, just refer them somewhere else.
In contrast, with a controversial field there are many uncertainties. The patients may have to pay themselves and some are not able to, the other doctors may consider you a renegade and the patients are hard to help — sometimes they can’t be helped. Doctors hate patients they can’t help (Groopman, 2008).
Doctors who want to do research will find it a lot easier to get funding for uncontroversial fields. If a doctor does enter a controversial field, the chance that research funding dries up is much greater and it is difficult to get established in another field since the funders of research prefer scientists with a proven record in that field (Ioannidis, 2018).
The media is a part of the problem
The media is not the only factor causing all these problems, but it is clearly a major one as it reaches so many people at all levels of society. Video is especially powerful at shaping people’s opinions.
Film can give a voice to people who are otherwise misunderstood and ignored. Quality films allow the viewers to connect with the characters they see, even if their situation is very different, such as in Wonder, Still Alice, and Hidden Figures.
Sensationalistic filming and writing tends to portray sick people as freaks and promotes stereotypes and biases against anyone with that disease.
More articles on this topic can be found on www.eiwellspring.org/media.html.
2018 (updated 2019)
Sources and references
Much of this article is based on the writer’s personal experiences dealing with MCS and EHS for more than 25 years, and the experiences of personal friends. Many sad stories have also been heard in the waiting room at the Environmental Health Center in Dallas
Gibson, P. et al., Perceived treatment efficacy for conventional and alternative therapies reported by persons with multiple chemical sensitivity, Environmental Health Perspectives, Sept 2003.
Gibson, P. et al., Disability-induced identity changes in persons with multiple chemical sensitivity, Qualitative Health Research, 15, 1-23, April 2005.
Groopman, J., How doctors think, Mariner Books, 2008 (chapter 1).
Hauge C. R et al., Mindfulness-based cognitive therapy (MBCT) for multiple chemical sensitivity (MCS): results from a randomized controlled trial with 1 year follow-up, Journal of Psychosomatic Research, December 2015.
Ioannidis, J., Rethink funding, the way we pay for science does not encourage the best results, Scientific American, Oct 2018.