The Conditions of Disability: Bipolar Disorder and the "Sick Role"
One idea that I encountered a little while ago is a concept from sociology called the “sick role.” It is the idea that there are certain implied rights and obligations of people who are sick in various ways. In short, people who are sick are exempted from certain social obligations, but in turn are obliged to try to get better and do so by seeking professional assistance. I realized that people with bipolar disorder are often cast in this sick role, but that such a position puts us in a passive situation that is ultimately not good for us.
The Sick RoleThe sick role is a concept that was developed by sociologist Talcott Parsons in 1951. He was interested in the ways in which people with illnesses are exempted from certain social expectations. Suspicious that society never simply exempts people socially, he noted that the exemption came with certain strings attached. He divided sickness into both the rights and the obligations of people who are sick. The rights attached are the following:
- Sick people are exempted from their usual duties.
- Sick people are not held responsible for being sick.
In turn, though, this is not a pure exemption. Society has certain expectations of people who are sick. In other words, these exemptions come with certain “strings attached:”
- People who are sick are expected to seek health, in so far as is possible.
- People who are sick are expected to seek professional help and to obey those professionals.
Parsons identified ways in which people who are ill are exempted from their normal social expectations, but also that these exemptions come with obligations of their own. Source
I want to separate out the question of whether or not the sick role is an accurate description of social roles and the question of whether or not it is a good thing that the sick role exist. I believe that the sick role does often accurately describe the social position of sick people, but that the sick role is ultimately a damaging role for those who are cast in it.
How the Sick Role Applies to Bipolar People
After having read about the sick role, I realized that much of this concepts apply to people with bipolar disorder. In so far as people with bipolar disorder are considered to be disabled, they are exempted from the expectation that they be functional (I’m going to conflate sickness and disability in this post; I will return to the distinction in another article). In addition, in so far as our bipolar disorder leads to odd or disruptive behavior, that behavior is often excused on the grounds that we are bipolar.
This, of course, isn’t always the case. However, this is often considered the ideal, including by people who have bipolar disorder. For people who have severe enough bipolar disorder that they are unable to work, they do not wish to be considered “lazy” as a result of their disability. When we have episodes, we hope that people will not hold against us the ways in which our episodes are odd or genuinely disruptive. The rights of the sick role are very important to us.
However, the sick role is also important for understanding why we are expected to get treatment, and why there is such pressure to be under the strict direction of medical professionals. For a long time, I thought that this expectation came from the social esteem that professionals had built up for themselves. However, Parsons’ theory implies that the expectation that we be under professionals comes from the relationship of sick people to society, not the relationship of professionals to society. This struck me as a very plausible explanation of where this expectation comes from.
Problems with the Sick RoleI see three primary problems with the sick role. First, it has the subtle implication that people who are mentally ill must be, somehow, not seeking proper treatment. Second, it does not apply very well to people who have permanent, chronic illnesses like bipolar disorder. Third and worst, the expectations that come from the sick role expect us to be passive.
In the first case, the sick role explains why we will occasionally hear statements like, “Did you forget to take your medication today?” or “That guy needs help,” intended not as concerns, but as insults. This happened last year, when the mayor of Calgary got angry at someone on Twitter and told him insultingly that he was “off his meds.”
This turns the sick role on its head, but ultimately follows from it. If the sick are expected to get professional help to get better and to be excused from their social role, if the sick aren’t getting better, it must be because the person isn’t seeking proper help. This doesn’t follow logically, but it can psychologically. It is no wonder, then, that we as mentally ill people keep getting told to seek professional assistance when we are already doing so. This is a frustrating and stigmatizing position to be in.
In the second case, we have the problem that bipolar disorder is a chronic and permanent condition. This isn’t to say that we can’t get better at managing the condition. We certainly can. However, since the sick role implies that we are attempting to “get better,” people can often become frustrated with us when we aren’t completely cured. After all, isn’t that our job? So, we end up with the situation that people get increasingly frustrated with our “lack of progress.”
Finally, the sick role casts us in a condition of passivity. It does not include the important concept that people who are sick are in any way authorities on which treatments are working. Instead, it implies that we contribute nothing to our own treatment, and that the sick are expected to simply submit themselves to experts, who are the authorities in everything.
I don’t think that experts aren’t useful. I think that experts are incredibly useful, and that I would be far worse off without them. However, I see them more like car mechanics at my service than as authorities to whom I have a moral obligation to submit. The sick role, however, puts experts in a hierarchically superior role to the sick under them, who are expected to follow “doctor’s orders.”
The sick role has serious implications in our ability to seek effective treatment. Because we are not seen as authorities in terms of which treatments work best to us, barriers are set up that prevent us from moving to other options when our current treatments aren’t working.
It can be very difficult to transfer from one psychiatrist to another, especially if we are in a situation in which we cannot afford our own treatment and depend on social assistance (something fairly common given our disability). It means that when we seek so-called “alternative therapies,” even as an experiment, we are blamed whenever those treatments go awry. However, all of us need to proceed by trial and error. Being blamed every time something doesn’t work discourages and penalizes us for the very process of getting better.
I believe that the sick role is often an accurate representation of the kind of role into which people with bipolar disorder are cast. However, I don’t think that this role is ultimately good for us. It includes subtle and not-so-subtle aspects of blame, all of which increases the stigma we encounter. Further, it hampers our ability to seek the treatment that we need, and ultimately interferes with our process of better managing the condition.