The Sick Role

The Sick Role is a concept that was introduced by Talcott Parsons, a medical sociologist, in the 1950s. I remember coming across it many years ago when I was busy with my undergraduate studies in sociology and psychology. The idea behind it was that in society we sometimes assume certain roles which entail certain expectations, as well as defining reciprocal types of behaviour. For example, if a person is 'sick', he should be treated differently, he should be excluded from the same social expectations, and he should be seen as not able to do the same things as others who are not sick. On the other hand, he would be expected to behave in a certain manner, including accepting his condition or sickness, seek help from professionals and submit to their expertise, demonstrate efforts to follow the recommendations, guidance and treatment of these professionals, and generally work towards 'getting better'.

Perhaps this may seem to make sense. I am not feeling well. I go to the doctor who tells me I have some health condition, and that because of this condition, I am permitted to take some sick leave and stay home to heal or recover. I am also supposed to go for some in-depth blood tests and other procedures if this is what he instructs me to do. The doctor, in turn, is the professional who can assess and diagnose me, who has the authority to assign a diagnosis and label to me, which will be on my record. He also has the authority to make statements about what I am able to do and write professional reports about me. He can also instruct my employer that I need special accommodations that should be made by my work or elsewhere based on the fact that I am sick and as part of treatment. He can also ask or even insist to speak to my family to guide them on how to take better care of me, which may include telling them that I do not accept my condition and may even resist the diagnosis and treatment. And that this is in fact part of my sickness.

My role in terms of the theory is that I am supposed to accept the authority and expertise of the good doctor since he knows more about me and what ails me than I do myself. I have to follow his recommendations, and if I don't, he may say I am 'resisting treatment'. If I do not allow him control, he may go as far as refuse to treat me in which case I have to find a new doctor. I have to accept that I have whatever condition he says I have, and I have to act my part. If I am booked of sick and cannot go to work, I have to stay home and recover. I cannot go to the movies because sick people do not go to the movies. I cannot be seen running some overdue errands and being seen about town, because sick people do not do these things. I can stay home, preferable in my bed, and "be sick".

Now, my work has to give me sick leave, should leave me alone and not call me for work while I am sick (and at home in bed). They also cannot expect me to come to work. They cannot discriminate against me and say I am not ambitious or hard-working enough because I am sick, not lazy, not dodging work. Except of course if I am seen going to the movies, because then I am not doing what sick people do. My colleagues cannot complain about the fact that they now have to do my work because I am sick. It is out of my control. My sickness is not my choice. And when I submit my insurance claim for my medical appointments to the insurance, they have to pay, because I am sick, because an expert gave me a diagnosis.

Lets extend this even more. I think I am ok. I don't think I am sick. My family goes to the doctor because they are worried about me. The doctor agrees that something is wrong with me. Perhaps the fact that I do not want to be called sick or undergo treatment is in fact an indication of exactly how sick I am, or the unique type of sickness. So, unfortunately, they have to force me to attend treatment. Because after all, they are acting on my best interests. My sickness is so bad that I do not have 'insight'. In other words, I do not submit to their 'expertise', I do not accept the label or 'diagnosis'. It may even be worse, the doctor may decide that I do not have 'capacity' to decide what is good for me, so other people get the right to decide what is wrong with me, and as much as it pains them to do so due to my lack of insight, they may be forced to commit me to some involuntary treatment and/or admission. For my safety it may be a locked ward.

What has always intrigued me about the sick role, as I tried to demonstrate in the above narrative, is that some of it really makes sense, and not only with regards to physical health conditions. Some of it makes sense even in relation to mental health. Do people sometimes not realise what is happening to them, or even realise that they are a risk to themselves and others, yes. Are there times when people are not able to make decisions in their own best interest, yes. For a large part of my career I have worked in services with people with what is called severe and enduring mental health conditions. There is nothing simple or binary about these matters, and I want to make that clear. And I do believe a lot of work has been done on trying to balance the power and authority of the expert and professional with the views, experience and needs of the person on the receiving end. It sometimes seems like a pendulum swinging from one side to the other.

However, having done the above as context, I want to consider some of the related issues around neurodivergence. A key part of the sick role relates to the specific nature between the person who is sick, and I will not start referring to the neurodivergent, and the expert, which is likely to be a psychologist and other similar professionals. It is a relationship where one person is the expert and has the power to unilaterally, based on interaction with the individual and others in his life, make a diagnosis and assign the diagnosis and with that, the role and its expectations. And you may ask, 'why is this so bad?'. Apart from the fact that an expert has to be paid thousands to assess me and write a report?

First of all, the diagnosis allows for special accommodations in terms of school and work to be made, depending on which country you are in. Surely this is good? Yes. Of course. But my concern is not the different forms of care that the sick role permits, but the price of the sick role. I am different now. I cannot be expected to perform like others. I am special and need special treatment. Those around me have to be very careful to be politically correct in referring to me. It is a massive game of walking on eggshells. I am already aware that I am different. I am already struggling to fit in and feel a sense of belonging and sameness. And now I have a label around my neck the says 'special educational needs'.

Second, everything I do is seen through the filter of the role. And this filter is based on disability, of not being able to, and of what I do being manifestations of my diagnosis. It introduces a language of deficit and difference that does not celebrate difference, but essentially sees it as manifestations of my underlying condition. It introduces a narrative that spreads like a virus and taints everything about me and around me with the role. The 'autistic child' signals very clearly that there is something wrong with the child, poor them they cannot help it, they 'have' autism, and beware, they are going to be acting strangely because of their various 'deficits' as defined by the diagnosis. Remember, they cannot read social situations. Remember, the cannot read social cues. Remember, they may freak out when the lights are too bright. So lets all try to keep them calm and regulated and give them a toy and soft blanket so they can self-soothe.