The expert patient: Illness as practice

 

I feel like I have finally found what angle to take on this years project. I knew I had to do a lot more research into the subjects of chronic illness, self, grief and living as a chronically ill person. I came across this essay by Andrew Edgar, which has definitely shed some light into my perspective moving forward. This essay looks into chronic illness as a practice, similar to how illustration is a practice. The title and abstract intrigued me as I had never thought of my illness in this way

In this post, I have attached the images of the text with the notes I have made and I’ll expand on them.

It is to argue that patient with chronic illness requires certain virtues that will allow them, not to cope with the illness, for “coping” reproduces the instrumentalism that is in question here, but to understand and bear witness to their illness.

The act of “bearing witness” to their illness is something I identify with. What I am having difficulty in communicating is the distance I feel with my self because of my fibromyalgia. There is a degree of bearing witness, as if I am watching what is happening to me and what I am experiencing, whilst somehow remaining disconnected.

MacIntyre describes a practice as a:

coherent and complex form of socially established co-operative human activity through which goods internal to that form of activity are realised in the course of trying to achieve of those standards of excellence which are appropriate to, and partially definitive of, that form of activity, with the result that human powers the ends and goods involved, are systematically extended

What I understand from that, in short, is that practice is an activity undertaken with the goal of getting better at it. Under this definition, I can understand why chronic illness could be considered a practice, as most chronic illness patients strive to improve their symptoms. Edgar continues:

MacIntryre’s examples of practices are not merely highly complex activities, performed communally and with traditions behind them, but also are typically entered into voluntary

In lectures, we have looked at practice as research and practice through, but the common theme in all of our practices is that we enter them voluntary. I am an illustrator because I want to be an illustrator. I do not want to be a chronically ill person, but I am, and this is why there are so many mixed emotions surrounding having a chronic illness aside from the experience of physical symptoms.

 

On one dimension, chronic illness is likely to restrict the agent’s participation in practices by restricting the number of practices that can be enjoyed, for certain activities may now be physically (or psychologically) beyond the agent.

This is something I know all too well. I can give you an extensive list of things that I can no longer do as a result of my fibromyalgia. I now struggle to cook for myself, as a recipe is too much to cope with mentally and physically in a short space of time. I used to be a dancer, but that is now too much of a physical demand. I even struggle to walk sometimes without any physical consequences. This is not only incredibly frustrating, as it means I have to rely on others to cook my meals and drive me to places I could’ve previously walked to, but it is emotionally difficult to let go of these activities and learn to appreciate them from a different stance and in a different role.

Yet, on a second dimension, chronic illness changes the nature of participation in practices that are still open to patients

In relation to my own practice, I have actually moved from photography to illustration, largely because of my illness. Before I was diagnosed, I studied photography at Coventry University and graduated with a first class honours in 2014. I then went on to work as a photographer on board cruise ships and then as a photography manager at a holiday park. That was the last job I had, as my illness took over. Photography relies on time and place, goals I cannot work towards with precision because of the unpredictability of my symptoms. Fibromyalgia has made me unreliable; I now cannot really plan to be somewhere without knowing how I will feel, whether I will be able to wake up or move. I took to illustration as this was something I could do at anytime and at my own pace to a degree. If I struggled with insomnia, I could work into midday and then sleep. I do now have some limitations to my work, as I suffer with chronic pain in my hands. I have started to develop my skills in digital illustration on Photoshop, as this is more gentle on my hands. Also, I have a tendency of working in short bursts, possibly why my work has started to largely consist of quick line drawings. Even considering this, I am able to engage in my practice, and am learning new ways to do this through practicing illness and illustration in relation to each other.

The second dimension suggests that there may be distinctively “chronically ill” ways of doing things

As I said before, this is something I am learning through playing in my practice. How “distinctive” it is, I may need feedback from others to determine whether this is true. I have explained that my work is now becoming quick line drawings, which could be considered distinctive to my illness, but not exclusive to my illness, as plenty of others practice illustration in this manner.

Chronic illness, even if not itself a practice, may then give a distinctive quality to other practices. This is both potentially more productive for the patient, but also offers the possibility of recognising chronic illness as a challenge that demands a renewal and extension of the other practices themselves

This is related to what I was previously saying about my practice now becoming perhaps distinctive as a result of my illness, but also I have allowed my practice to be informed by my illness. The work I am producing all has a narrative of chronic illness and my experience with it. I am letting my limitations become advantages, giving a subject and insight into it that non-sufferers could provide or quantify. This relates to a TED talk I have watched by artist Phil Hansen called “Embrace the Shake”, which I will look at in another post.

..story-telling is fundamental to the way in which humans make sense of their lives and their activities

I believe that this is how we make sense of who we are also, our identity, self, and what roles we have and how they relate to others. Story telling gives us a sense of our past and our future, but these factors relate to our identity. This is something I am currently struggling to fathom. I have never before experienced such levels of uncertainty for my future because of my illness. I have ambitions and I cannot be certain if I can fulfill them because of factors out of my control. I understand that to a degree, this can happen to anyone through external factors. It also makes you question previous experiences. Because I now I am unsure of my identity, I see the past differently, and because I move from different identities constantly I am always baffled by previous experiences, particularly evens in relation to my illness. As I continue to learn about my illness, I think back to events and wonder whether I have been ill for longer than I have. I also wonder whether my diagnosis is correct, as I finding new symptom combinations that work closer to the description of other illnesses such as M.E, more concerning as this is something very common with chronic illnesses like these.

Without a resource of stories to draw upon to construct the story of one’s own life, we are left as “unscripted, anxious stutterers” in acting in the world (ibid). Without a suitable story that will tie together the present, past and future, the person will have no coherent framework within which to go on meaningfully in their everyday life.

This links to what I was saying previously, but also links to illustration as a practice. On Tuesday, we discussed as an illustration class what illustration was. We came to the conclusion that illustration is communication, with the ability to communicate what cannot be quantified. Through illustration, I want to quantify what my illness has done to me in terms of my identity, as well as physically and psychologically. So if illustration is communication, then it is also storytelling. So without any illustrations of what my illness to construct the story of my life, which I am continuing to research and find, then there is no material for me to identity with. I currently don’t feel like the issue of identity crisis as a result of chronic illness is being addressed directly. It is being dealt with to a degree, but I still feel that there s a certain amount of tip toeing around the subject, maybe not using the right language. I do not have the answers, but what I have looked at so far has done very little to help me in my quest to finding oneself again.

Within this quote also, there is a sense of fluidity and chaos, endless and being undefined. I regularly see the words “recovery is not linear” on my social media feeds from wellbeing bloggers and they resonate with me as well as this quote. Recovery, or recovering identity, has no clear path. I am going around in circles a lot, or like a pendulum going back and forth. It’s never straight forward.

One’s sense of self is biographical, and such it is constructed and re-constructed by telling stories about oneself. On the other hand, the story will change to encompass unexpected events in one’s life

I really like this quote, and feel it explains a lot of what I plan to research through practice, but also perhaps addresses with my main struggles. Maybe I have an understanding of my identity, but the pace at which it is being re-constructed is something I cannot mentally keep up with. My sense of self changes so often, probably hundreds of time a day, not just subconciously, but something I am very aware of and think about a lot. Actually, is this what my problem is?

This changes, not just how one sees one’s future, but also how one reconstructs one’s past as a route into that new future

As mentioned before, this quote covers how I struggle to relate back to my past when events, no matter how big or small, are reconstructing my perception.

Precisely because it is not a temporary phenomenon, chronic illness will affect not merely the patient’s participation in a range of practices, but also the unifying narrative that the patient may try to construct about participation and their self-identity. …One loses one’s map and destination…The chronic illness may throw into question one’s whole life

I feel like this perfectly encompasses my issues with chronic illness and how it as affected my ever changing perception of self. I really like the line “One loses one’s map and destination”. For me, this is a perfectly worded metaphor for this experience of loss of self but also the loss of where I am going.

There are none (or more precisely, all too few) stories appropriate to the experience of chronic illness. The normative point is that there ought to be more stories. This gives new significance to the idea that chronic illness might be a practice.

Ones quest for identity, and thus the possibility to go on acting meaningfully in the world, must proceed by finding a way to tell a story about oneself as a chronically ill person

These quotes essentially cover what it is I want to achieve through my research project on this MA. These quotes alone have really helped me to identify what it is I am trying to convey and visualise. This will not only be of help to me in my recovery process, but I feel this could help other sufferers with similar chronic illnesses. They may not necessarily be educated in what I produce, but be able to see an experience that we share, which in itself is helpful to recovery.

This page also addresses some of the daily struggles experiences by chronically ill patients. This includes the misinterpretation of actions. A fatigued state could be misconstrued as being rude. I experience this a lot, particularly when it comes to public transport. Sometimes I sit in the disabled seats at the front, because I cannot physically walk to the back, I can see people look at me and some have even confronted me about it, saying that I shouldn’t sit in the disabled seats if I’m not disabled. Even catching buses for short journeys, drivers have told me that I should just walk because I look like I could. There is no right way to deal with these situations, but have decided that I could either lie and laugh it off, which I have done, or be upfront and say I have a disabling condition and am in a lot of pain. That generally shuts people up. By doing that, maybe these people reflect on that and rethink their suggestions.

A lot of what I have taken notes about on this page has already been covered, but what I really took from this is something that was also mentioned in “Unrest”, which I did a post about recently. In the stories we have about illness to refer to, they tend to end in triumph or fatality, defeating the illness or dying from it. What the stories of chronic illness are missing, are the ones where it is not life threatening, but no cure exists. It can feel like a very long winded story of surviving, with some lifts in symptoms but sometimes they’re worse. You’re neither cured nor die. There are few stories like this. Maybe that story doesn’t satisfy the audience? This is something I want to register in the next year on my MA.

Again, a lot of this has been covered, but what this page briefly touches upon is how the storytelling could be achieved as a “communal task”. This leads on into Module 201, which I have started to think about already, where there is a collaborative aspect to the project. My proposal definitely has a theme of education, so definitely translates well into collaborative projects. Without thinking too hard about it, I see this working as a workshop, in helping other sufferers share their stories, maybe to be made into zine. Also, speaking to others about this could work really well, to open others minds to how chronic illness affects others. Either way, plenty of options and things to think about.

Overall, reading this essay has definitely helped in being able to articulate through words what I’m trying to do. Since I’ve had fibromyalgia, I’m not as fluent in the written word as I used to be, so hitting an academic text on the subject has definitely helped me find the terms I’m looking for, as well as be able to structure my point more coherently. Maybe this is an exercise I could if I feel like I’m slipping in my articulation.

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