Guest Post: ‘I don’t want to die, but I am too scared to be anything different’: The role of identity in mental illness

Anke Snoek
Macquarie University

If you break a leg or have a cold, it probably wouldn’t affect your identity at all. But when you have an invasive, chronic illness, it will probably change your way of being in the world, and the way you perceive yourself. Our body is the vehicle with which we interact with the world. There are many personal accounts in the disability bioethics literature on how a chronic illness affects one’s sense of being. For example, in the work of Kay Toombs, who was diagnosed with multiple sclerosis, or Havi Carel, who was diagnosed with lymphangioleiomyomatosis (LAM), a rare lung disease. Both describe how their illnesses gradually changed their identities, their senses of being.

With the inability to pursue certain goals and projects that used to be important to her, Toombs experienced a loss of the various roles she occupied: professional, lover, caregiver, student, mother, and breadwinner. Toombs describes how after a certain amount of time, she got used to her new body and to the use of a wheelchair. Just as a woman who is used to wearing a hat with a large feather intuitively allows for extra space for the feather when walking through a door, so for Toombs her wheelchair eventually became part of her body. However, this new bodily scheme entails a loss of the old identity that is so profound that she can’t even remember being the old person.

When I see myself on a home video, I experience a sense of puzzlement. I catch myself wondering not so much whether the body projected on the screen is my body, but, rather if the person in the video is really me. However, if I see old pictures of myself when I was walking, or leaning on a cane, I find it hard to remember how it was to be that person, or even who I was when I moved like that. (Toombs 2001, 254)

She describes that her husband had a similar experience. When he looked at an old photograph of her where she is standing, he remarked in wonder, ‘weren’t you tall?’, thereby expressing his difficulty in identifying her with the old image of herself, the standing person.

Illness can become an entangled part of one’s identity, an identity that one endorses. After a while it can be hard to imagine one’s identity without the illness. I mapped out this relationship between chronic illness and identity as a stepping stone to dissect the complex relationship between mental illness and identity. The literature on disability bioethics has pointed out that some disabilities are more easily accepted as a positive identity than others. For example, people born with deafness often don’t see this as a disability, or label themselves with a positive disabled identity, while people with multiple sclerosis often do see themselves as disabled. Some mental illnesses, especially those who often start in early adolescence, like addiction or anorexia, can be part of a positive identity as well, especially in a certain stage of the illness.

In describing her experiences with anorexia nervosa, Jess states that anorexia is very much ingrained in her identity now. Her struggle with anorexia started in early adolescence, which is formative stage in the development of a person’s identity. Now, 17 years later she says:

I know that my life would be better without it but it’s so much a part of my identity, I don’t know about any other way of living.

Even when her anorexia was life threatening, she found it hard to change: ‘I did not want to die, I never wanted to die, but I was too scared to be anything different.’ Jess thinks that the key to treat anorexia would be early intervention, before anorexia becomes ingrained in identity. A similar experience is described in an article by Tan and colleagues about anorexia. They asked one of their research subjects, what would change when they would magically cure the anorexia. The person replies that they couldn’t imagine this because ‘it is just part of me now’

There are similar stories in addiction. In ‘Drugs are the only life I knew’ Kate describes how she felt a loss of identity when recovering from a substance-using lifestyle, and compares this feeling of loss of identity to someone who just lost a long-standing job, or whose children have grown and left home.

I felt not so much like I missed the druggie lifestyle, but that I was starting to lose my grip on who I was, and was finding it hard to function. (…) I think a lot of the time when a person is trying to quit drugs and keeps relapsing, the personality/identity side of it is overlooked, I think that’s just as difficult to gain control over as the physical drug usage.

Owen Flanagan described how alcoholism can become woven into the fabric of everyday life.

Their personhood, their character, is constituted, in part, by a history of drinking, by a set of identifications and practices that involve alcohol, and that make these individuals who and what they are. (…). Undoing alcoholism as a form of life, and not more narrowly as just a drinking problem, involves fairly radical undoing and then redoing of oneself.

One difference between physical illness and mental illness is that identity change can play an important role in recovery. Adopting the identity of a healthy person can’t cure cancer but substance users can sometimes regain control over their addiction by adopting a non-using identity. This strategy is especially effective in early stages of dependency. Flanagan describes how his brother decided that being an addict was incompatible with other identities he endorsed: being a rock/ice climber, serious bike racer, competitive half-marathoner, and ultra-marathoner, and so managed to overcome his addiction to be the person he regarded himself as.

The question then is how to untangle the using-identity from the non-using identity, especially in chronic, late stage addiction, when it becomes deeply ingrained. Marc Lewis’s new book, The Biology of Desire: Why Addiction is Not a Disease (2015), might offer a new way of looking at the problem. Lewis criticises the concept of recovery . It is not the case that we ‘recover’ the old identity, but rather that we start something new: we form a new identity that incorporates the experiences we have lived.

The tricky part with the relationship between identity and mental illness, is that because it can become part of someone’s identity, people often think that someone chooses it. Paradoxically, the stigma attached to this view on mental illness makes that people have less options to positive identities that may be beneficial for their recovery. Flanagan’s account is very illustrative at this point. ‘Even the heroes drank whiskey. They never got drunk. (…) I didn’t want to be a drunk. [A]nd yet drinking started to seem as natural to real life as breathing.’ Endorsing a drinking life, or endorsing thinness doesn’t mean endorsing addiction or anorexia. The influence of mental illness on identity should be taken seriously, just as identity change after physical illness should be taken seriously.

If you want to share your personal experience with how illness influenced your identity, please feel free to leave a comment.