A note before you begin… I
wrote this piece as I was sitting with discomfort and frustration;
somewhat perplexed with my chronic illness and the
general reception I’ve received on occasion. It is
not of my usual style – I was angry at the time, but it is a
subject I’ve been pondering for a while and I feel that it
is important to share. I’m not entirely convinced I’ve managed to
project my ideas well… but I will leave it here regardless. After
all, I am learning to embrace vulnerability and sometimes it
is in the expression of ideas that I feel the most vulnerable.
I’m
not sitting comfortably with it.
This
is not the first time I’ve succumbed to chronic illness, but this
has been the lengthiest of my healing journeys as I’ve attempted to
reach… well, I want to say to reach recovery,
but I’ve not really got to the point of “recovery” with my last
big effort either – probably more like the lengthiest journey to
get to the point of living the best me. I’m currently not
living my best me, and it is frustrating, disappointing and
exhausting.
No,
I’m not sitting comfortably at all. You see, I’ve entered into
something called “the sick role”.
I
remember learning about the sick role in first year undergraduate
Sociology, all the way back in 1993. It’s funny how sometimes we
learn the theory of something, but it takes a lived experience to
really understand it. Talcot Parsons is the name of the American
structural-functional sociologist who posited the “sick role” in
1951. It is one of several societal roles that he understood human
beings to live within over their lifetime. Structural-functional
sociologists theorise that society functions within a network of
accepted roles which each of us play out in order for us to live
functionally and harmoniously. Anyone non-conforming to expected
roles is considered deviant from the norm. A deviant in society.
Parsons
describes the sick person as essentially no longer performing a
functional role in society (temporary or otherwise), and therefore is
conditionally but acceptably deviant from the norm. This
deviance is considered acceptable because the change in role comes
with two inherent rights, and two responsibilities that the person
entering the role of the sick person is conditioned with. These are:
the right to be exempt from normal social roles; the right to be
deemed not responsible for their condition; the obligation to try and
get well; the obligation to seek technically competent help and
cooperate with medical professionals.
Those
of you who know me well, will have already made assumptions (probably
correctly) about where this piece is headed. Revisiting the sick role
from within, all these years later, here I stand: the hackles on the
back of my neck rising, my breath drawing more and more short, my
fists tensing, my stance tall and strong and I am poised like a
wildling ready to fight. Dr Parsons: I take issue with your
sick role theory. I am not entirely convinced that it’s
deviance is accepted by society at all.
Firstly,
that the sick possess the right to be exempt from normative social
roles, and the right to not be held responsible for the illness. The
right to be exempt from our role as an employee? The role of a
parent? The role of a spouse? Just for example. Really? I mean, I get
it – we can take limited time off from our role as an
employee (sick leave), most of us get ten days a year here in
Australia. But how many of us have been afraid to “call in sick”
for fear of repercussion? What happens when we use up our ten days?
How many have lost their jobs or been disciplined for an extended
time away from work due to illness, or medically retired? All of
these employer sanctioned actions hardly suggest that the employee is
not responsible for their state of health. Our obligation to our role
as an employee frequently overrides our obligation to the sick role.
We can politely decline a social gathering with the excuse of being
unwell. How many times can you politely decline an invitation and
continue to be invited? And what about other societal roles? How many
parents can take time off from their parental role?
Arguably,
it may be that it is our own conscience that renders us unable to
take time out – I have previously discussed at length the
difficulties some of us face when trying to say no. But the
expectations we place on ourselves are usually forged by society as a
whole; especially in a world where we value exhaustion and being busy
as signs of success. When entering the sick role conflicts with the
expectations of the other roles we play, the deviance of the sick
role is no longer acceptable… employers pressure us to return to
duty before we are well enough, and you bet they are judging us as a
bad employee when we are unable. When our sick role conflicts with
our role as a parent, you bet we are judged as a bad parent by
other parents. And so on for our other roles.
On
the subject of not holding people responsible for their illness? What
about disease and conditions born of poverty? Of violence? Of
addiction? I’m not convinced that society as a whole is accepting
of these types of illnesses. Over and over I’ve heard or read the
rhetoric: they didn’t work hard enough; she should have left; it’s
his own fault for taking the drugs in the first place. Dr Parsons,
our society hardly respects the rights of the sick. Yet, it seems
that it is still expected that the obligations of the sick role are
upheld.
You
know what I think my main issue with the Parsonian sick role might
be? It might be that in accepting the sick role as truth, the
assumption is made that those in the sick role are there voluntarily.
I would argue that it is rare – and it is certainly the case in my
experience – that someone chooses illness voluntarily. It is
inherently problematic to view those within the sick role as being
there voluntarily when assumptions are made about their ability to
fulfill the obligations of trying to get well and to follow medical
advice. Sometimes the chronically ill just can’t keep it up.
Sometimes the sick role becomes overwhelming, with all the rights and
obligations blanketing over our heads like an eternal black smog
which chokes us with every effort we make. And then the rhetoric
again: you’re not trying hard enough; you just have to push through
it. The notion that the sick are obliged to try to get well: isn’t
this just another version of victim blaming? Doesn’t this
contradict the right to not be held responsible for the illness? I’m
not perfect – I know I’ve judged others, commenting out of
frustration at a client who “won’t even help themselves”.
Accepting
the existence of the sick role as truth also assumes that the medical
profession knows best and are able and willing to help. While those
in the sick role are obliged to seek out and follow advice from an
authority on wellness (doctors), that authority doesn’t always seem
to be obliged to listen to or help someone in the sick role. I
recently tried to seek help… it took me four doctors and a 3234km
flight at great expense to find a practitioner who would even listen
to me, who would believe me. Is it any wonder I am a “sick role as
an accepted deviance” skeptic? Is the doctor then the gatekeeper of
the sick role? The one who decides on the validity of a sick claim?
Or is it society as a whole?
I’ve
been placed into the sick role; and it’s not voluntary. I’ve been
placed in that role by others. I’ve been denied it’s legitimacy
by some. I’ve resisted it myself. And loved ones have tried to
support me in it as best as they can. Being exempt from normal social
roles without your consent is somewhat damaging to our psyche,
especially when that exemption is inconsistent. It wears at our self
esteem. But it also teaches us many lessons, especially about the
true nature of our peers. I’ve seen those who are not accepting of
the legitimacy of the sick role pull away, my relationship with some
changing as my usefulness to them has altered. I’ve had medical
professionals dismiss my pain and distress. I’ve been forced back
into other roles before I was ready, because my obligation as a sick
role participant is to follow the advice of the medical professional:
even when he is wrong.
Putting
people into boxes with labels they should conform to - it doesn’t
work, and it’s not comfortable for anybody. But if we’re going to
do it, shouldn’t we at least do so consistently?
References and Reading List
Comments
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If you are following along I would love to hear from you. Put that vulnerability aside and let rip! ;-)