Living with a chronic illness in a late-stage capitalist, ableist society gives rise to various complexities. There are many metaphors that explore the reality of existing in the midpoint between these dualities, including Susan Sontag’s conceptualisation of the realms of the “Kingdom of the Sick” and “The Kingdom of the Well”.
Individuals, not just those who live with chronic illness, spend their lives traveling between these two worlds — constantly trying to reconcile their identities. Societal attitudes and structures intersect with the experience of illness to privilege productivity over wellbeing, pay attention to visible more than invisible illnesses, and separate the private and public experience of illness — i.e. the way you are treated by friends, family and the medical system.
Individuals with chronic illness also navigate dualities that are both positive and negative. For example, Sontag delves into the duality of hope and uncertainty that accompanies a diagnosis of a serious illness. This is seen when Sontag writes that, “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” People with disabilities often seek to maintain hope, yet the unpredictability of illness can lead to a constant oscillation between optimism and anxiety.
The experience of individuals with chronic illnesses navigating between these two worlds is not only a personal struggle, but one that is influenced by societal attitudes, including the expectations driven by late-stage capitalism and internalised ableism. The pressure to appear “functional” and conform to societal norms — often influenced by capitalist ideals of productivity and success — can lead to a sense of isolation and even exacerbate health issues.
Late-stage capitalism places a strong emphasis on productivity and achievement. For those with chronic illnesses, keeping up with the pace of work and life can be challenging, leading to a conflict between prioritizing one’s health and conforming to societal expectations. Balancing self-care and well-being with the pressure to meet capitalist standards of productivity is a continual struggle. In an era of social media and curated online identities, individuals may present a public persona that hides the challenges and struggles they face due to their chronic illness. This duality between the image projected to the world and the private reality can contribute to feelings of isolation and misunderstanding.
Throughout history, certain illnesses have been associated with moral or character flaws. In critiquing the tendency to blame individuals for their illnesses, we can challenge the ableist perspective that implies that individuals are responsible for their conditions. We can challenge the societal assumption of health as the norm and ideal. This perspective contributes to ableism by marginalising individuals who don’t conform to the able-bodied norm. We can question why health is often perceived as the default state and challenges the cultural definitions of what is considered “normal”.
The work of writers with disabilities have challenged the societal constructs that contribute to the dualities experienced by those with chronic illnesses, shedding light on the need for compassion, understanding, and a reevaluation of societal attitudes toward health and illness. In embracing vulnerability, we can reject ableist expectations as a form of empowerment. By challenging societal norms and redefining strength, individuals with disabilities can create spaces for authenticity and self-acceptance.