What is 'The Sick Role' and How Does it Affect How We See People with Chronic Illness?
Is an outdated sociological idea the reason there's so much stigma around chronic illness?
So you’re probably wondering what the hell is the ‘sick role’, let me tell you:
See, Parsons believed that illness is a form of deviant behaviour within society, the reason being that people who are ill are unable to fulfil their normal social roles so they are ‘deviating’ away from the norm. He was worried that there was a ‘subculture of the sick’ developing and if too many people claimed to be ill then this would have a dysfunctional impact on society, (ironic now after covid) therefore entry into the ‘sick role’ - the role you take on in society when you get ill- needed regulating. (Milton)
The sick role concept draws attention to the social regulation of illness: It is supposed to guarantee the compliance of sick persons, help to restore them to health, and ensure that only the genuinely sick are exempt from normal responsibilities.
What’s the problem? Not all of us who get sick get better.
So let’s break down what the sick role is, it’s basically a set of rules that a sick person has to follow and then another set of rules that a doctor should follow.
Each person has a set of ‘rights’ and a set of ‘obligations’ here’s what they are:
The Rights of the Sick Person
The sick person is temporarily exempt from performing ‘normal’ social roles (such as going to work or housekeeping). The more severe the sickness, the greater the exemption.
A genuine illness is seen as beyond the control of the sick person and not curable by simple willpower and motivation. Therefore, the sick person should not be blamed for their illness and they should be taken care of by others until they can resume their normal social role.
The Obligations of the Sick Person
The sick person is expected to see being sick as undesirable and so are under the obligation to try and get well as quickly as possible.
After a certain period of time, the sick person must seek technically competent help (usually a doctor) and cooperate with the advice of the doctor in order to get better.
The Rights of the Doctor
Status and reward due to the functional importance of their role and to encourage individuals to go through long years of training.
Considerable autonomy (personal control and power over one’s own actions) in their professional practice.
A position of authority in relation to the patient (as they are the trained expert and the ‘gatekeeper’ to the social role of being sick).
The right to examine the patient physically and to enquire into intimate areas of the patient’s physical and personal life.
The Obligations of the Doctor
To be highly trained and bring a high degree of skill and knowledge to their work.
To be motivated by concern for the patient and the community, rather than seeking professional gain.
To be objective and emotionally detached.
To be bound by rules of professional conduct (e.g. ‘The Hippocratic Oath’).
Everyone at some point or another has taken part in this social process, for example, you got a cold or the flu, you and everyone around you decides that it is acceptable for you to rest for a few days and “not contribute” to society. You go to the doctor, they do a test, they give you antibiotics and you do your best to get better. After a certain amount of time you are well again and can re-enter society, everyone accepts you back in and agrees that it must have been “terrible”. You have just performed your part in the sick role.
The sick role may not be something you knew existed but you have performed your part before and likely set the same expectations from the people around you without even realising it. That is the point of this article, to show you how this attitude has impacted society and how it still affects those with chronic illness’ today even if the individual themselves don’t realise it.
So now we understand what the sick role is, let’s break some of it down so we can further understand how it impacts views on chronic illness today.
If a person is temporarily exempt from their usual duties, what happens when the illness turns chronic and they can no longer function as they used to in society? FOMO is a common feeling amongst the chronically ill, but something you may not know is it’s not just FOMO of the “fun” stuff, most of us wish we could work, we wish we could clean, we wish we could care for others. It’s not just about the concerts, seeing friends or partying, we really are missing from the world in multiple ways and we grieve it all.
While the sick role recognises that a sick person should be exempt from such duties, it also stresses the need for the sick person to be able to return to them and this is something that is upheld by almost everyone. Friends and family (apart from the ones who really get it) expect you to return to your old self eventually, many people with chronic illness lose most if not all of their friends because they become “boring”. No longer able to go out on the weekends or leave the house for long periods of time, people with chronic illness are often left behind. The sick role may not be something on your mind when you tell your friend to “get well soon” but it has absolutely informed your attitude.
Who decides what a “genuine illness” is?
Some people are referred to as having “medically unexplained symptoms” (MUS) in fact, Studies from around the world found that 25-50% of primary care patients presented with MUS. (Mrcgp) MUS are bodily complaints for which adequate examination of the patient does not reveal a sufficient cause or reason for the symptoms - basically they don’t know why you’re experiencing the symptoms you have. (Marks EM, Hunter MS)
When I was 13 I had to go into A&E several times, eventually - after visiting many times- a junior doctor conducted an extremely in depth physical examination, I remember her carefully moving my limbs around and pressing hard on my fingernails and watching them as they returned to their usual colour. They still didn’t know what was wrong (turned out it was glandular fever and a blood test was all they needed).
So what about the countless chronic illness’ that present differently depending on the patient and are often diagnosed through process of elimination? Who decides what a “genuine illness” is?
When a patient goes to the doctor with symptoms neither can find the cause of, GPs not only use traditional biomedical diagnostic tools but also rely on their own opinions and evaluations of a patient’s particular circumstances in deciding whether that patient is legitimately sick. The doctor is thus a gatekeeper of legitimacy. (Mik-Meyer, N., & Roelsgaard Obling) If a doctor decides that you’re probably faking it or its all in your head what are you to do?
My personal experience is with MECFS so that’s what I’ll be focussing on today, I feel as though it would be disingenuous and ignorant to address other conditions as I have not studied or experienced them.
If there was ever a list of illnesses that would cause so many contradictions to the sick role, MECFS would be right up there.
MECFS is a complex neurological chronic disease that presents with symptoms in multiple body systems. Patients often have “medically unexplained symptoms” for years before they finally find the answer.
Surveys of GPs demonstrated that a third to a half of all GPs did not accept ME/CFS as a genuine clinical entity and, even when they did, they lacked confidence in diagnosing or managing it. (Pheby DFH, et al) and when it comes to MECFS recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of “normality.” (Cheshire A, et al) People with MECFS find their “baseline” - their daily amount of energy and symptoms - then try an operate within their “energy envelope” - the amount of energy they have in a day that they can use without causing a flare up. This requires a lot of acceptance and contradicts Parsons’ view that patients with illness should try their best to get back to normal as quickly as possible.
if we could pop a pill, eat some kale or go to a yoga retreat to solve our problems we would!
How does this manifest in today’s world?
“Have you tried yoga? I heard it can be really helpful for chronic pain!”
“If you just did a bit of meditation each night you would probably sleep better and then you wouldn’t be so tired all the time”
“It’s all about mindfulness, you’re caught up in a negative bubble, it’s like you want to be ill, if you try and be happier a lot of your symptoms would go away”
“I dont think its a real illness, you should just try to live your life”
If a sick person isn’t “seen” to be doing their best to get better than you bet that the majority of people around them are going to weigh in with their absolute gems of knowledge and try to solve their problems!
Chronic illness is uncontrollable, it is non-discriminatory and it’s bloody awful, if we could pop a pill, eat some kale or go to a yoga retreat to solve our problems we would!
Accepting your long term chronic illness or disability is something Parsons suggests is “deviant behaviour” because you are no longer viewing your disability as “undesirable” as Parsons would have you do. (the mental health related consequences of perpetually rejecting your disability is a chat for another time.)
As I pointed out before, you may not be thinking to yourself, “huh, this person doesn’t seem to be doing enough to beat their chronic illness, the sick role says they should, so let me help them” but this social process runs deep and is ingrained into many of us.
Research about disability is dominated by positivist theories, which means that it focuses on cures and clinical interventions and a lot of these scientific researchers refer to disabled people as “sufferers” or “victims” this is the sick role’s influence at work. Parsons and other functionalists who believe in the sick role have confused disability with impairment, they are failing to recognise that disabled people do not necessarily have “something wrong with them,” this is harmful because it reproduces discriminatory stereotypes (Oliver M) instead of acknowledging the disabled person as an individual facing many intersectional problems in the world.
The sick role also gives GP’s an immense amount of power: Status, reward, autonomy and authority? No wonder so many chronically ill people end up in endless battles with their GP before they get the right treatment. With increasing cuts, covid, long hours, the day-to-day of running a surgery and poor working conditions it is no wonder that chronic illness is not at the forefront of the average GP’s mind. A junior doctor working in London recently said, “There is no professional development – you just show up each day and do the best you can against the challenges faced.” (WHO)
What is professional development? It is gaining new skills through continuing education and career training after entering the workforce. It can include taking classes or workshops, attending professional or industry conferences, or earning a certificate to expand your knowledge in your chosen field. (L parsons) Which is compulsory for GP’s in the UK. It is my belief that if we want our GP’s to be better at understanding chronic illness then we should make chronic illness a compulsory part of their professional development.
There is already such an imbalance of power when you enter a doctors room, you are vulnerable and ill, they are the professional in that situation, can you imagine how hard it is to teach them about your illness and how easy it is for them to dismiss you as a “doctor google”? It’s like walking into a lecture hall and trying to teach the person giving the lecture something they already think they know enough about.
The attitude towards doctors has changed over recent years, before the internet if you had something wrong with you, you went to the doctor, they either agreed with you and prescribed you something (whether that be medication or rest) and you went about your day. Now however, more and more people have access to information than ever before, people are now able to google their symptoms and compile a list of possible diagnoses based on their symptoms, the question has changed from “doctor what’s wrong with me?” to “doc, which one of these things is the right diagnosis?” The different generational attitudes towards doctors is pointed out by the fact that patients aged 18-24s were the most likely to say they were dissatisfied (30%) while over 65s were the least likely to say this (8%). (Been Let Down?)
So, while our own attitudes towards GP’s has changed and we no longer see them as a higher authority who “knows all” and expect a higher level of knowledge and acceptance from them, perhaps it’s time for us to also change our attitudes towards the sick and recognise that a cold is different to a chronic illness and a disability is different to an impairment.
Perhaps it is time for us to adjust our expectations of the chronically ill because as it stands we are putting even more of the burden on them to not only identify their condition and manage it alone but to also cure the impossible.
Now that you know of and (hopefully) understand what the sick role is, you will be better equipped to question your immediate judgements and assumptions about the next disabled or chronically ill person you meet.
References:
E M Milton, D. (n.d.). Talcott Parsons and the Theory of the Sick Rol. Retrieved March 12, 2024, from https://kar.kent.ac.uk/62743/55/Talcott%20Parsons%20and%20the%20theory%20of%20the%20%27Sick%20Role%27%202004.pdf
Mrcgp, C. T. (2023, April 17). Medically Unexplained symptoms (Assessment and Management). https://patient.info/doctor/medically-unexplained-symptoms-assessment-and-management
Marks EM, Hunter MS. Medically Unexplained Symptoms: an acceptable term? Br J Pain. 2015 May;9(2):109-14. doi: 10.1177/2049463714535372. PMID: 26516565; PMCID: PMC4616968.
Mik-Meyer, N., & Roelsgaard Obling, A. (2015). The Negotiation of the sick role: General practitioners’ classification of patients with medically unexplained symptoms. National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3555361/
Cheshire A, Ridge D, Clark LV, White PD. Sick of the Sick Role: Narratives of What "Recovery" Means to People With CFS/ME. Qual Health Res. 2021 Jan;31(2):298-308. doi: 10.1177/1049732320969395. Epub 2020 Nov 11. PMID: 33176575; PMCID: PMC7750673.
Pheby DFH, et al, A Literature Review of GP Knowledge and Understanding of ME/CFS: A Report from the Socioeconomic Working Group of the European Network on ME/CFS (EUROMENE). Medicina (Kaunas). 2020 Dec 24;57(1):7. doi: 10.3390/medicina57010007. PMID: 33374291; PMCID: PMC7823627.
Oliver M. Theories in health care and research: theories of disability in health practice and research. BMJ. 1998 Nov 21;317(7170):1446-9. doi: 10.1136/bmj.317.7170.1446. PMID: 9822407; PMCID: PMC1114301.
World Health Organization: WHO. (2023, March 23). “There is no professional development – you just show up each day and do the best you can against the challenges faced.” World Health Organization. https://www.who.int/europe/news/item/23-03-2023-there-is-no-professional-development---you-just-show-up-each-day-and-do-the-best-you-can-against-the-challenges-faced
Lparsons. (2024, January 17). Why is Professional Development Important? - Professional & Executive Development | Harvard DCE. Professional & Executive Development | Harvard DCE. https://professional.dce.harvard.edu/blog/why-is-professional-development-important/
Why patients are turning to Dr Google for Medical Advice, instead of relying on their GP | Been Let Down? (2023, November 17). Been Let Down? https://www.beenletdown.co.uk/insights/patients-turn-to-google-for-medical-advice-due-to-long-delays-and-fears-of-misdiagnosis/
this is so important and well-written!