Living with the Uncertainty of Chronic Illness

“Clinicians can learn from these renegotiated narrative endings to work with
patients to tell a recovery narrative when it is needed to reassure family and
friends and to renegotiate a parallel narrative that reflects the open-endedness of
chronic illness and disability.”

-Rebecca Garden, “Telling Stories About Illness and Disability”

Rebecca Garden explores the ways in which illness, specifically chronic illness, are portrayed in text and media. Where, more often than not, the inclusion of an illness is used as a plot device, meant to symbolize some deeper shortcoming about the afflicted character. This is detrimental for obvious reasons; it paints disability as negative particularly when it is used to symbolize a character’s intrinsically villainous nature. Even in autobiographical works which depict life with chronic disabilities, there is a lack of authenticity. Although readers of autobiographies might assume the narrative they are reading is an unfiltered glimpse into living with that disability, the truth is that autobiographies are ruled by the conventions of literature. Therefore, they are prone to downplaying the difficulty and uncertainty that is an inherent part of living with chronic illness and disability.

I live with a chronic illness: IBS (Irritable Bowel Syndrome). The first part of the battle was getting the diagnosis, which required several doctor’s visits, a specialist, and some trial and error. Then, once I finally got a diagnosis, there was a feeling of hope. I thought, “Now that they know exactly what’s wrong with me, they can fix it”. It’s not quite that easy with a chronic illness.

The truth about chronic illness, which is not often portrayed in media and literature which uses it as subject matter, is that there is no end. The “Triumphant Ends” which define the genre of literature about illness often present a mischaracterization of what it truly means to live with a chronic condition. Rather, the presence of pain and the intensity of that pain fluctuates on a daily, weekly, and monthly basis and is incredibly unpredictable. So not only do you have to deal with that physical pain, but you also have to deal with the anxiety of never knowing when that pain will appear. When I am having a particularly bad flare up, my mindset is colored with anxiety. I think “Will the pain be this bad tomorrow when I have to work?” or “Will I be in pain during class, when I need to focus?”. Further, the fact that chronic pain is recurring means that I can’t stop my life simply because I am experiencing pain. If I did that, I would miss out on a majority of the events and obligations which make up my everyday life. Living with a chronic illness is more than physical pain, it’s also mental and emotional exhaustion at having to juggle that pain with everyday life knowing there is no end to it.

Seeing illness and disability represented in literature is important because living with a chronic condition can feel isolating. So seeing yourself represented can be a way of healing, coping, and finding solace. However, Garden explain the danger of believing autobiographies are entirely authentic: “This tendency ignores the literariness—the constructedness—of first-person accounts and, by masking the norms that shape narratives, reinforces the degree to which autobiography’s insistence on a happy ending influences expectations about illness”.

By: Danielle Flores

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: