Warning: contains GIFs
Guilt has been my constant companion throughout the course of my illness. It admonishes me for the things I cannot do, and shames me into believing that I am responsible for my own incapacitation. I am not alone in feeling this way. But just why is guilt such a common feeling among the chronically ill? And why do we spoonies so often feel responsible for that which we cannot control?
I came to reflect on why I experience guilt after a news article appeared on my Facebook feed. It described a formerly fit and healthy woman, who began experiencing alarming symptoms and was quickly rushed to hospital. She was diagnosed with a chronic disease, but after a mere week of being in hospital, was so over it that she up and left. After a biffo with her doctors, she resumed her normal activities, including gruelling overseas aid/mountain hiking trips. Of course she still had her chronic illness – but as she had such a “positive attitude”, she didn’t let it affect her life.
I don’t mean to shame this woman, as everyone experiences illness in a different way, and suffering differs as much as the people who experience it. However, the tone this article took was troublesome. Her actual medical treatment was glossed over, with the focus instead on the individual’s achievements despite illness, particularly emphasising that her positive attitude enabled her to live an active life. As the article stated, she didn’t want to sit around “feeling sorry for herself”.
But what happens when you cannot control the outcome of your illness? When despite having a positive attitude, trying your hardest and accepting medical intervention, your illness still dictates every aspect of your life?
Above: a clip from Dennis Potter’s 80s teleseries, The Singing Detective, starring Michael Gambon. If you haven’t seen it before, you’re missing out.
I’ve written about the damage caused by inspiration porn, and how there are ways to be a “good” disabled person. It seems that the media continues to dictate how the lives of chronically ill people “should” be, by only presenting a sanitised version of illness. When the only stories the media seems to cover are “heroes” who bravely battle through their illness, not allowing it to affect their lives, or fallen soldiers who lose their fight, the experiences of those who live every day with debilitating chronic illness are erased.
With the way society treats illness, it is no wonder the chronically ill feel guilty. When illness is presented as a war which you either win or lose, there is no place for those who have to live with their illness for the rest of their lives. This imagery infuses the experience of living with a chronic illness with a certain bodily agency which, in many cases, is absent. The very nature of disease means that the body it inhabits will be restricted in its abilities, and it is foolish to think otherwise.
I am ashamed to admit it, but I believed I was responsible for my illness for years, even when I was bedbound and dying. It was only when I read a book that specifically contradicted this thought, exposing it for the dysfunctional thinking that it was, that I realised that I hadn’t done this to myself.
But why wouldn’t I have those beliefs? For all my life, the media has promoted the idea that we control our bodies, and a mere hiccup like ill health can be turned around with a little magical thinking. Even living with my mother, who has been chronically ill for much of my life, did not prepare me for the reality of chronic illness, for the terrible revelation that nothing I do can change the course of this disease.
Learning this is a journey, not a sudden turnaround. Medical professionals reinforced my dysfunctional thought patterns, by blaming me for my illness, accusing me of being a faker and insisting that I could do anything I want, if I only tried. It is hard to learn to forgive your body when you are met with countless quips from acquaintances who knew someone with your disease, but could still hold down a job, as if the idea of just trying to work had never occurred to me in the past six years, and I was kept helpless by my own desire to stay housebound and dependent.
I cried when I read that article, because it presented a view of chronic illness which simply does not exist. If positive thinking and hard work could treat a disease, I would have been cured long ago. As it is, my hard work means very little in the face of a disease which has swallowed up my entire adult life. The implication that those severely debilitated by illness such as myself have chosen to sit around feeling sorry for ourselves is as hurtful as it is untrue.
Spoonies feel guilty about the lack of control they have over their illness, because society tells them to. When unrealistic expectations are a key indicator of depression, it is no wonder that so many struggle with the reality of living with chronic illness. As Jules observed, “it’s not the guilt, it’s the shame”.
It shouldn’t be this way. We chronically ill folks deserve to have our stories heard, and the media needs to share them. I am encouraged by ventures like The Mighty and Chronically Awesome, which empower the chronically ill and disabled to tell their stories in their own words. ABC Ramp Up was another excellent initiative, before it was defunded. If news stories reflected the reality of living with chronic illness, those affected would learn that their experiences are not their fault or “wrong”.
No one should feel guilty or shamed for being chronically ill. Unlearning these beliefs is hard, but it starts with the truth: your illness is not your fault, and you are enough.