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Out of all the books I read since I got sick, Susan Sontag’s “Illness as
Metaphor” helped me the most. Even though the medical nonfiction I read before helped me to understand the physical processes that happen through endometriosis and fibromyalgia, “Illness as Metaphor” explaines why I get so many frustrating comments from friends, family and strangers, why I seem to find a shitload of unqualified information and recommendations on the internet – and, most importantly – why I was thinking the way I did about the illness myself (and about the illnesses of others, too).

Here are five thoughts and a conclusion of Sontag’s book, “Illness
as Metaphor.”

1. Society uses metaphors to give a meaning to illnesses it does not understand.

Susan Sontag was diagnosed in 1988 with breast cancer. It was a time “when psychotherapy was the normal alternative way to treat the patient’s supposed ‘cancer personality’ through which patients should seek to overcome their «resigned, repressed and inhibited personality» and understand that they unconsciously created the cancer themselves so they could finally heal.[1] Not willing to buy into this common ‘cancer story’, Sontag surrounded herself with piles of books and rummaged through the stories we tell ourselves about this and other illnesses and about the metaphors we use.

She found, for example, that in early times, illnesses or plagues were understood as punishment of the goods for the community (and not for individuals). And that we used to tell ourselves, that people with Tuberculosis, the symbolic illness of 19th century, were thought to be individuals, who are spiritual, romantic personality, lighting up in the face of death, to burn in passion before receiving a light and airy death. The tuberculosis patient was understood as someone, who is too passionate to live. The cancer person in contrast -spoken about in numerous ‘scientific’ journals or books in the 1980’s – was someone, who holds back his or her vital forces and emotions, who buries the real wishes inside, until they start to rot and form an ulcer.

The tuberculosis metaphor disappeared after the discovery of the bacteria ‘Mycobacterium tuberculosis’ and the new accompanying treatment methods.  The cancer myth is fading with the developing understanding, but is still persistent.

If we do not comprehend an illness, we tend to do two things: We stick to the notion «that a disease can be explained only by a variety of causes»[2] and we rely on metaphors, which build a bridge to an assumed psychological cause. Since today we face numerous diseases with unknown cause, it might be good to keep this mechanism in mind.

2. Such metaphors are always linked to personal traits and ultimately to victim blaming

As plausible as any of these illness-stories might sound, they are not based on scientific evidence, only on anecdotal ‘facts’ or some sort of associative or magical thinking. They seem sound to us, because they provide an easy cause-effect explanation, which our mind finds strikingly satisfying. They also do have an almost silent, but comforting undertone, that such an illness, is, in all probability, not going to happen to a well balance person like ourselves.

The mentioned metaphors (and the ones Sontag’s examines, such as the ones for Aids, Syphilis, and Plague) have one thing in common: They associate the illness with a corresponding, and probably causing, mental state – because what else could be responsible if we do not find an explanatory physical cause?  As mental states are thought to be changeable through will power, so can illnesses be cured away through a shift in thoughts.

This argumentation suggests control over something, upon which people « have in fact little or no control. [It] undermines the reality of a disease”[3]. It does so, based on a – even in a seemingly secular country- existing, « sublimated spiritualism, a […]  way of affirming the primacy of ‘spirit’ over matter. »[4]   Therefore, an illness is something which can
– and should – be addressed in the mind. And thereby subject to every person themselves, as a responsibility of the personal ‘mind hygiene’.

In this explanatory frame, people who get sick with ‘unclear, mysterious, mind-related disease’ do have a clear path that leads them to recovery, they just have to be willing to work through their crap and rethink themselves correctly.

This is victim blaming in its purest form. And harmful to every sick person who fosters this kind of thinking and therefore loading shame and self-hate on themselves.

3. This is not to say that no connection between mind, body and society exists.

The opposite of such an understanding, relaying strictly on a ‘physiological’ model, has some difficulties too. Not only because scientists know now, that psychological, socio-cultural and physiological factors all have effects on each other and vice versa. New research also suggests interesting connections between illnesses and different forms of
oppression (such as the health crisis of people of color in the USA and the identified effect of racism and sexism on psychological illnesses such as depression[5]) which provide not only new insights in the complex field of health, but also show shortcomings of the ‘physiological’ model and its primary method of curing in the form of medication.

Not understanding illnesses as metaphors does not mean saying
there is no connection between body, mind, society and environment. It does not mean neglecting the fact, that thoughts and attitudes can play a hugely important role in wellbeing. But it does mean restraining from metaphors, which seem to provide answer we simply do not have. It does mean foregoing metaphors that are potentially harmful to people, exactly because there is this strong connection between psyche, body, and social environment. And exactly therefore an understanding of illnesses as metaphors can have an extremely negative impact on ill people, who we should try not to harm even more. Common sense, isn’t it?

4. A lot of good people buy into these metaphors.

To return to Sontag’s thoughts about Tuberculosis : The (not too negatively connoted) image of tuberculosis as an illness of the ‘high minded’ was expedited and promoted by many popular writers and it was a topic of many conversations in 19th century salons, where people pretended to cough ‘in a tuberculousy  manner’ hoping, that it would be a signal for their fineness and their « genteel, delicate, sensitive » character (28) they needed to signal their upwards social mobility.[6] Some researcher even suggest that there was a whole lot of ‘Tuberculosis chic’ going on in these days, with pale faces and narrow, skinny bodies.[7]

We can maybe never detach ourselves fully of the pending stories our society tells about (certain) illnesses, but let’s try and at least choose stories which comfort the sick and not the well.

5. It’s still going on

The thought of illness metaphors is still persistent – almost 30 years after Sontag’s book. It’s possible, that the situation is better today, that such ways of thinking are found today mainly in the self-help or New Age corners of bookshops, but I argue, that we still rely heavily on this line of
thinking and talking about illness. Examples are found in the life of a women with Endometriosis, who are told by total stranger, that they just need to find peace with their womanhood. Or in the struggles of people with Fibromyalgia or Chronic Fatigue Syndrome who are fighting for the legitimation and acceptance of their diseases until today and – since the cause is still largely unknown and therefore understood as complicated and manifold – hear doctors tell them, that they are too perfectionistic, putting on too much pressure on themselves and should just chill out more.

Illness as metaphors and the concomitant victim blaming affects every sentence where symptoms are related to personality – And today one can find countless studies where personal traits are linked to a group of patients with a certain condition. Why is this done?

In quantitative studies which measure one point in time, it is only possible to measure correlation and not causation. So even if people with
condition X have higher social anxiety, disfunction, perfectionism or whatever, you can never tell if these personal traits have been the cause of the illness. Or if they are instead the result of the way that society treats you, if you have a certain condition (let’s say by assuming that you could think your way out of your illness).

Even if personal traits and some illnesses occur together in a significant pattern (because they are inherited on the same gene, or something
like that):  if a researcher writes a sentence like: “It is a common clinical experience that patients with fibromyalgia are perfectionists with high personal standards, a high need for achievement, and low self-esteem”[8], he or she plays into the metaphor game. This is because if you do not stand up against a predominant pattern of thinking (that we learned to get used to) you are indirectly reinforcing it.

Susan Sontag concludes that it would be the best and most truthful way of writing, thinking and talking about disease, to renounce such metaphors and try to see them as fact-oriented as possible. With her and many other clever thinkers in mind (such as Cara E. Jones[9] and other feminist cultural analysts) it can be much easier to face every day ableism and dismantle the underlying thoughts and unjustified metaphors instead of
getting hurt by them.

Conclusion

I did it too, I’m sure. Probably when teenage-me was ranting about vicious bankers or internal devitalized adults, caught in their boring money-life, that they would get ill for sure, stomach ulcer or something along these lines.

Before I became sick, I didn’t know that speech acts like this reinforce ableism. After I became sick, I had this indefinite, uncanny feeling facing this “illness-as-metaphor” concepts in literature, conversations or self-help books. Sontag’s book helped me to find the traces of thought that lead to a more liberated understanding of myself and my illnesses.

This is something we need desperately now, living under a neoliberal
regime, a time where healthy people fall for a green smoothie- infused, weight lifting health craze because everyone is feeling the pressure to take care, to watch out, to prevent falling sick, because it would be your own fault if you didn’t. (A line of thought that sadly fits perfectly with the ongoing decline of social security services we find in many countries.)

And as terrifying as that is, a book like this can give us terms and words to describe what’s happening, to reveal misguiding patterns and fight them so we can work towards a better, more emphatic thinking about illnesses.

I’m curious: What are the illness metaphors that you find active in speech, words and literature around you? How you fight them (in your head)?