I 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 :)