Illness as an identity

First, I know this will be a controversial topic. I found a thread on Twitter with many chronically ill people ripping the idea to shreds. So I want to be clear, this will not apply to many people who are chronically ill. However, I’ve known people where this has been the case and who often don’t see for themselves that this has happened.

So, what kick started the twitter thread, and this post, was a psychologist (I think) saying that for some chronically ill patients, their illness has become their identity.  Not just something they identify with, but their entire identity.  The person was saying that for these patients, engaging with the healthcare system to the degree that they do is not always helpful and can actually be harmful, physically or psychologically.

She went on to talk about using the twelve step program traditionally used for addiction to help this subset of patients and I don’t want to talk about that.  I don’t know enough about the program and what I do know, doesn’t always sit well with me.  But the issue that many chronically ill people were having wasn’t with the 12 step program, it was with the idea that what she was saying was basically patient blaming.

The initial tweet was followed by a number of versions of “I don’t want to be chronically ill, I don’t choose this” which I think is problematic in the context of addiction as addicts don’t chose addiction. But it’s also problematic because people are saying this doesn’t apply to me and therefore it must not be relevant to any chronically ill person.  An overlooking of the fact that the psychologist was talking about a small number of chronically ill people.  Chronic illness isn’t a unified group, for starters there are many different ways to be chronically ill and different people are at different stages of the psychological work that goes with being chronically ill.

After reading this twitter thread, I went on to do some research about the idea of illness as identity and much of it confirmed what I thought.

There are different ways people react to chronic illness and I’d like to point out that that doesn’t make for better or worse people. We all deal with things differently, based on our life experiences and personalities.

Visualization of the four illness identity constructs.
The dot represents the heart disease and the circle represents identity. Illness Identity

Whilst the above diagram is focused on heart disease, the model works for chronic illness more broadly.  There are four routes which patients tend to go down:

  • Engulfment
  • Rejection
  • Acceptance
  • Enrichment

And the patients that the psychologist was likely talking about were those who become engulfed by their illness.

Engulfment indicates the degree to which patients feel that their disease dominates their identity. These patients completely define themselves in terms of their disease.”
Illness Identity

This seems to me to be the group of people who spend vast amounts of time at the doctors or hospital when its not really necessary. Who call the doctors at the first sign of what is likely a “normal” issue- a sniffle, a cramp, extra fatigue- and who don’t consider that it could be a “normal ” issue or a response to something they’ve done. Or who only ever talk about their illness.

“When the individual becomes absorbed in his or her chronic illness, he or she focuses on the suffering, loss and burden associated with it. His  or her self-identity will then be formed around being a patient as he or she identifies with the sick role.”
Chronic Illness and Self-Identity

I know people who in theory want to do x,y,z but who use their illness as a way to avoid even attempting it. I’m talking here about things which are achievable within that person’s limits but which never get attempted because of the way that illness is consuming them.

I’ve known people who’ve had surgery after surgery for an issue that surgery will not cure. I’m talking here about 20 surgeries on the same joint even though all the literature advises against any surgery. This life then becomes about surgery, being a patient, recovering and repeat. It seems to be reasonably clear that something else is going on here. That the person is using surgery to try and meet some need, whether that’s the hope of a miracle or the attention and care that comes with the cycle. These are valid needs but there are other ways of meeting them.

On the other hand, I know people who vehemently push against their illness, pretending it isn’t there and that has its own issues.

“Another construct pertaining to illness identity is rejection, which refers to the degree to which the disease is rejected as part of the patient’s identity and is seen as a threat or as unacceptable to the self.  Patients with high rejection scores tend to refute their disease, which often results in suboptimal disease self-management and adherence.”
Illness Identity

I think most of us go through stages where we dip in and out of the different categories and that is ok, our health changes, our life changes.  And of course having a chronic illness is likely to affect how you think about yourself, how you see yourself and your identity but everyone is more than their illness.  An ideal end point, especially if there is no known cure for your chronic illness, is acceptance.  This is not about denying the illness but about trying to live your life with your illness.  Acceptance gives you resilience, adaptability and a better quality of life.

Although it is a constant process, one that is never completed,individuals can, through reframing the experiences of the ill body and ultimately surrendering to the illness, form a new positive self-identity… when an individual accepts the sick body instead of constantly comparing it with both its past capabilities and the hopes of its future perfection, the sick body becomes predictable, manageable and even comfortable.”
Chronic Illness and Self-Identity

And on a final note, I have ehlers danlos syndrome, I am not ehlers danlos syndrome. I am Helen. I am a writer.  I am an artist, a friend, a reader and so on.

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