The Mental Load of Living with Chronic Illness

What is it like to live with chronic illness? Well, the physical symptoms vary vastly depending on the type of illness and whether its related symptoms are chronic or remitting and relapsing. The mental weight of living with any chronic illness tends to remain the same across diagnoses, however. This mental load can be a lot to bear, especially when coupled with ongoing symptoms of illness.

Many individuals with chronic illness struggle with energy, both physical and mental. Christine Miserandino (n.d.), who struggles with the auto-immune disease lupus, describes the drain on energy using what is now known as “The Spoon Theory.” She describes the way her chronic illness forces her to “make choices or to consciously think about things when the rest of the world doesn’t have to” in terms of spoons. She only has so many, and each day, she has to make the painstaking decision about how to use the spoons she has, a number which she can never accurately predict, either. Chronic illness, most of the time, is entirely unpredictable (Chabot-Purchase, 2019; White, 2001). Chronic illness often requires lifestyle modifications for this reason (AC Admin, 2023). Individuals living with chronic illness do not necessarily want to make these adaptations. Their illnesses force them to do so.

Chronic illness brings with it a host of emotions. Individuals may feel sad, worried, and/or angry (AC Admin, 2023; Benkel, Arnby & Molander, 2020; Craft Concierge Research Team; MedLinePlus, 2022). Grief may accompany these emotions as individuals realize things they are no longer able to do, or at least do in the same ways (Benness, 2020; Psychology Today Staff, n.d.). Individuals living with chronic illness may feel vulnerable, which further increases their psychological distress (Denar et al, 2020). The mental load of living with chronic illness is real.

The tangential effects of living with chronic illness reach far. They have a social impact in that they often isolate individuals, leading to loneliness (AC Admin, 2023; Lucette, 2022; Raposo, 2023). Finances needed for treatment can become burdensome (AC Admin). Symptoms of chronic illness can impact tasks of daily life and ability to work (Chabot-Purchase, 2019; Craft Concierge Research Team, n.d.). These effects can start anew the cascade of emotions caused by diagnosis of chronic illness.

Living with chronic illness is a struggle, to be sure. That struggle does not have to define individuals, though. Individuals can learn healthy coping strategies to care for themselves and bear the mental load of their illnesses. Therapy can help. Community can help. No one, chronic illness or not, needs to bear the burdens of life alone.