Invisible illnesses: what is their narrative?

healthy-life-freeway-exit-sign-highway-street-18212486I was having a conversation with a dear friend (Valentine Oggan) and we asked the question:

Invisible Illnesses, why do people have problems with them?

There are ongoing debates about the stigma of mental illnesses, from Depression to Chronic Fatigue to Dementia and all in between, and how these illnesses and those suffering from them shouldn’t be ostracized or mocked or punished for them, and how can society integrate the sufferers with the non-sufferers and build a more accepting and tolerant, encompassing environment for everyone.

The biggest obstacle is people (non-sufferers)’s lack of understanding of these illnesses. They can’t see it, how can it be true? Is it not all in someone’s head? How can sufferers suffer and still go on vacations and such? Don’t they suffer all the time? If they don’t, then is their illness real?

If you think of illness as a narrative, then these questions become stunningly relevant and significant.

In a narrative, you have a beginning, a climax, a conclusion. Something happens, develops, ends.

In a visible illness, you have the first symptoms, the diagnosis, the cure.

For example, one has an accident and breaks a leg, the doctor/hospital confirms the broken bones with an x-ray, a cast is made and after 40 days, if there are no complications, the leg needs some physiotherapy and it’s good to go. Or, you start sneezing, you may have the flu or an allergy, you get tested, diagnosed, given a cure, and then you recover or control the symptoms.

In visible illnesses there is a clear narrative: a beginning (symptoms), climax (discovery of cause and diagnosis), happy ending ( a cure). Most successful narrative have happy endings, obviously not all, and that’s also where invisible illnesses come into play.

Invisible illness: what is their narrative?

The narrative of invisible illnesses is not a happy ending one. In fact, in most cases, it’s a non-ending one. Or one where the ending is not clear and easily communicated. Non sufferers can’t follow the story along because the story doesn’t end in the ways that are commonly accepted: it’s not a happy ending, or an ending.

The lack of visible/tangible narrative solutions to invisible illnesses makes people uncomfortable and deprives them of indicators of behaviour (complimenting one on surviving the illness/accident, sharing their own narrative and happy ending, etc).

Non sufferers hear a story/watch a film and there is no ending filmed: each narrative provides in itself the means to understanding it, but when those set pieces are invisible (no cast, fever, hospital discharge papers to show), non sufferers don’t see/accept that particular story.

This is in no way a finite thought, just an intuition I’d love to discuss more, and I know there are many out there discussing the narrative of doctors/patients relationships, and supporting a better understanding of invisible illnesses, and I wonder whether these ideas may help in any way 🙂

Do let me know what you think, in comments or by email 🙂




Filed under Article, Blogging, invisible illness, narrative, Non Fiction

6 responses to “Invisible illnesses: what is their narrative?

  1. Very interesting. I am struggling to create a more positive narrative for dementia as to date all the novels about dementia have a regressive or chaos narrative with no hope for the protagonist. I have written a happy ending for my own novel as a toast to people who are liviing “well” with dementia, even though I know there are others who are definitely not living “well”. I tried to make my narrative fit into the Quest form. I suppose I should ask a person living well with dementia to write a novel and see what happens. There are lots of people writing their memoirs but nobody as far as I know writing fiction. The fiction tends to be written by someone who has been involved with caring for a person with dementia. Sorry Sil, your post has sent me off on my own thread.

    People like to “fix” things and when they can’t they become uneasy. Uncertainty is one of the feelings 21st century people loathe because they have no control! We can control so many other things that uncertainty feels wrong and inadequate. It would be so much easier if people with invisible illnesses were able to dip themselves in fluorescent paint land reveal their illness under ultra violet light or something similar. But if a person has a heart condition, we can’t see their heart, can we? But we believe them when they say they have to take regular medication. We wouldn’t object to someone with a heart condition going on holiday. So it is only some invisible illnesses that cause the “problem” .

    It may take a computer programme which allows healthy people to experience what it is to be in constant pain/feel utterly hopeless or know their faculties will degenerate before there is real understanding. Just as all trainee doctors should spend a week confined to bed in a hospital as part of their training.


    • Nothing to be sorry about, love questioning this with you 🙂 I think the point is, we can ‘see’ the heart. Not straight away in the person when alive, but if extracted, we can examine the organ and point out its malfunctioning bits. There are articles and photos and plenty of evidence that we can accept it without seeing it directly, because others have seen it for us and their authority is a guarantee…which is why I think the storytellers/doctors have this important role of telling the stories about all the illnesses, the ones we see and the ones we don’t see. And like the other comment points out, unhappy endings add to the hostility towards the invisible illness. Makes sense?


  2. One of the saddest and also most difficult to accept endings to an invisible illness is suicide.


    • Yes, which is interpreted as sad/bad ending and narratives with unhappy endings come with a baggage of connotations (social, cultural, etc) which makes them, on the average, unsuccessful 😦 easier to blame what we see (the person) than what we don’t (the illness). Thanks for your comment!


  3. I think the literary narrative is extremely well-suited to the depiction of invisible illness, and helping people understand why these are serious and very present. What is lacking are books that deal with invisible illnesses in a way that is either seriously intense, or very internal or claustrophobic.


  4. Correction: what is lacking are books that DON’T deal with . . .


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