How Chronically Ill Patients Are Excluded From The "Sick Role". And Why It Matters
The Sick Role
Talcott Parsons a sociologist first defined the role of sick individuals in his 1951 book "The Social System." It postulates that there are 4 essential characteristics to those viewed as legitimately sick by society.
2 rights:
Exemption for daily responsibilities
&
Lack of blame for illness and right to professional medical care
Amd 2 obligations:
See being sick undesirable and want to get better
&
Seek "technically competent" help in a reasonable timeframe from a doctor
Parsons believed doctors served as the gatekeeps to the sick role. Those who did not "pass" said gate would be labeled "malingerers."
The sick role can be a helpful framework for talking about illness. But it breaks down in the face of chronic illness.
—-
Wanting To Get Better
Chronically ill patients want to get better. Like any sick person their symptoms and limitations are stifling and painful and they would like them to go away.
However, chronically ill patients have a chronic aka incurable illness. Therefore they do not expect to get better and often accept their illness. This is often mistaken by doctors and society for not wanting to get better.
Additionally, part of accepting your illness and processing chronic illness grief is learning not to see being sick as making you inferior to being healthy. This can be essential to salvaging one's mental health. Yet it commonly is seen as a failure to fulfill the responsibilities of the "sick role."
—-
Seeking "Technically Competent" Help
Chronically ill patients almost always seek medical attention for their symptoms.
However, because a chronic illness is an incurable illness, there is no cure. Thus it can be argued there is no "technically competent" help available to the chronically ill. Thus there is an inability to fulfill this "responsibility" of Parsons's "sick role."
Because there is not "technically competent" help available from the medical profession, chronically ill patients often turn to alternative medicine. This in turn is used to argue they are not seeking "technically competent" help even though the only reason they turned to alternative medicine in the first place is because the medical profession turned them away.
—-
Deserving Of And Requiring Medical Treatment To Get Better
Because there is no "technically competent" medical help available to chronically ill patients, or at least none that will help them to return to health, patients are deserving of something which does not exist. An empty right.
Rather than accepting that this is their failure, many doctors simply claim that since they cannot help a patient the patient must be responsible for getting better on their own. This turns an empty right into the exact harm the right was meant to protect against. It deflects the responsibility for a chronically ill person away from the doctor and onto the ill individual.
—-
Exemption From Daily Responsibilities
While illness exempts sick patients from daily responsibilities temporarily, it does not do so permanently.
Because most systems of disability are not set up to give adequate payment to live on, and furthermore often deny those with chronic illness, the chronically ill fail to be exempted from daily responsibilities.
This lack of freedom from daily responsibilities is then seen by society as proof that the ill person is not fulfilling the "sick role."
—-
Consequences Of Failing To Fulfill The "Sick Role"
With Doctors - When patients fail to fulfill the sick role in the eyes of their doctors they are labeled "malingerers" undeserving of help. Furthermore, this leads to a lack of medical support for non-curative symptom-supportive treatment. This can lead to doctors sentencing patients to preventable extreme pain and suffering.
With Family - When doctors and society view a patient as illegitimate, it can put great pressure on family to not care for them seen by others as "enabling" their illness. This in turn leads to abuse, neglect, and breakdown of the family relationship.
With Government - When government views patients as illegitimate they believe helping them is unnecessary. In turn, this means chronically ill people, the sick people most in need of financial support are denied it.
—-
Why Patients Want The "Sick Role"
Patients want the "sick role" not because they want to be sick. We want it because we already are sick and if that is not acknowledged by our doctors, family, and governments it leaves at risk of abuse, neglect, ostracization and even death.
The "sick role" might decide who is seen as legitimately ill and who is seen as a malingerer but it does not decide who needs help. All people deserve to have their needs met. The less testable and curable a disease is, in other words, the less medically studied, the more likely the "sick role" will be weaponized against people with that illness.
—-
Feminist Criticism Of The "Sick Role"
Chronic illness is more common among women than men (38 vs 30%)* with autoimmune disease 4x more common in women.**
Additionally, women are less likely to receive the "rights" of the "sick role." For example, women are rarely exempted from household duties and parenting duties even when ill. Because female diseases like endometriosis are less studied and have fewer treatment options, they are less likely to receive good medical care as well.
Not to mention women's illness is more often misbelieved or seen as psychosomatic leading women to not seek or receive "technically competent" help.
In this way women both face disproportionately high barriers to accessing the "sick role" and disproportionately low benefits from doing so. The same is true of all other minority groups who face less flexibility in labor expectations and less respect and belief from doctors this includes BIPOC, transpeople and low income or unhoused people.
*Health Central
**PMID: 33767739
—-
The Problem With The Label "Sick Role"
Parsons's theory of the "sick role" is ultimately flawed because it places doctors as the gatekeeps of who is sick and who is not. This especially fails in regards to the chronically ill.
Our bodies do not care if our illness is testable or diagnosable. There will always be people who are disabled and in pain from causes, we have not yet studied. Those people deserve just as much sympathy and support as those with established conditions.
The "sick role" supports and in many ways established the medical model of disability. But doctors are not gods and people's experiences do not need the backing a test result to deserve our care and attention.
You do not need Parsons or anyone else's "sick role" to be sick.
—-
The "sick role" is a way of conceptualizing the contract between ill people and society. In an ideal world this contract would perfectly encapsulate the responsibility of society to care for those who due to no fault of their own are sick or disabled.
⠀
Unfortunately the way the sick role has been conceptualized often excludes the chronically ill and is used not to enforce the social contract but to exclude people from it.
⠀
The humane treatment of ill people in society relies upon trust. Without trust in people to follow the social contract the system crumbles.
⠀
Yet under our current ableist society distrust in disabled and chronically Ill people is rampant and consistently perpetuated by politicians, doctors, and bosses. What should be a reason to be cared for has become seen as an "excuse." Regardless of the fact that it is largely out of individual control and no one aims to become sick or disabled.
⠀
This is not an accident. It is by design. Treating ill people humanely is expensive, and therefore, governments and markets fixated on GDP growth have every incentive to break the social contract that ensures humane treatment of the sick and disabled. This is why they break our trust in eachother. This is why they undermine our illnesses and disabilities, even more so those that affect multi-marginalized people who cannot fight back.
⠀
Because if we trust eachother. If we do not see being sick as a "role" but as a simple part of being human that happens to us all to varying degrees, they cannot strip away our humanity. Do not let them.
