With the loss of work and even before that, with the loss of self-worth, my sense of self, disintegrated and I faltered on how to repair it. I didn’t for some time. I just coasted. It has only been over the last four years I have really focused on repair and restructuring that real core of who I am in the face of disability. I question how I can be my authentic self without an actual sense of self. But my sense of self is a lot healthier than it was. Still, it could be much more well-developed. It is a work in progress.

But how can we be our authentic selves when chronic illness inhibits how we are in the world? And that is often how we experience a loss of self.

Title: Chronic Illness and the loss of sense of self
Subtext: And how we regain it
Image:Young woman leaning against a mirror

Loss of self

“A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones.

The experiences and meanings upon which these ill persons had built former positive self-images are no longer available to them

Sociology of health and illness

In this research it is said the loss of self occurs with:

  • Leading restricted lives
  • Social isolation
  • Being discredited
  • Feeling like a burden to others

I should note this was pretty old research but I found it valuable for the topic at hand. If you look at these factors and how slowly our sense of self is eroded over time. We lose worth, confidence, self-esteem. Soon we do not know really who we are in the world. Soon we just think we are this person who is sick. How can we Be in the World with our chronic illness? How can we have Value again? Fulfillment? Life satisfaction?

And this can lead to hyper-focusing on our illness or over identifying with it:

All-consuming focus:  Serious illness can flood identity. The seriously ill person may have essentially lost the ability to minimize his or her physical condition, explains Dr. Charmaz. 

‘Their illnesses become the focus of their lives as treatment regimes, living with constant discomfort, medical appointments, and the problematics of mundane activities of structure and fill their days.’

loss of self in chronic illness

In what ways can we see this loss of self in ourselves?

It is a problem if you do not know who you are beyond chronic pain and chronic illness. Not who you Were. Or who you Could Have Been. We lose our sense of self to the illness.

If we hyper-focus on our chronic pain then the experience is magnified in our conscious mind, our thoughts, our perceptions, our emotions… all aspects of how we live.

Time after time in qualitative research we read about people feeling they’re in “limbo land”, losing confidence that they can do what matters in their lives, feeling stigmatised and isolated – not themselves any more. An in-depth meta-ethnography of qualitative research showed that pain undermined participation, ability to carry out daily activities, stymied a sense of the future, and intruded on the sense of self (MacNeela, Doyle, O’Gorman, Ruane & McGuire, 2015).


Problem with our sense of self

Often who think we are doesn’t match with who we were, who we think we should be, who we think we could be… all sorts of mixed self-image messages.

self-discrepancy theory (See E. Tory Higgins works for much more about self-discrepancy), where the “imagined self”, the “real self”, the “feared self” and the “ought self” don’t match


And the values we used to have often do not align with the life we currently live either, leading to some serious dissatisfaction. If I considered in myself a core value of being a dependable, reliable, hard-working person and I know for a fact I am not perceived as such and I know for a fact I am incapable of being dependable or reliable anymore then those values no longer serve the life I actually lead. It isn’t so much that I do not value those things anymore it is that I have changed what my core values are now. The values I find truly valuable to live my life on… I had to adapt to my current life.

Persistent pain challenges the automatic assumptions people hold about what they can and can’t do, what they’re good at, what’s important in life, and how to engage with “the world” at large.


Still it is possible to regain or maintain a sense of self

As long as an individual feels that he or she exercises choice in valued activities and some freedom of action to pursue these choices, everyday life does not seem so restrictive, suffering is reduced, and self-images are maintained

Sociology of health and illness

If we feel some sense of control, some sense of choice in valued activities and we can pursue these valued activities… we can maintain our self-image. But, that often isn’t the case. Often that comes after our self-image has been crushed and we have to reconstruct a self-image and new ideas of what valued activities even Are.

Either way, our former sense of self is eradicated and we struggle to find an equally valued replacement New One. And that is where the problem lies because where are we valued? What is it that we do that is valued? How do we personally define valuable activities? What do we personally value?

Sense of self and self-image

  • What are your personality traits?
  • What motivates you?
  • What are your values?
  • What are your strengths?
  • What makes you happy?

Your self-image can also fuel recognition of your own worth. You aren’t perfect (who is?), but you still have great value.
Self-knowledge makes it easier to accept your entire self, both the traits you’re proud of and those you’d like to improve. If you do feel dissatisfied with certain aspects of yourself, you’ll have an easier time addressing those areas when you have a strong sense of your nature and abilities.
Lacking a clearly defined sense of self, on the other hand, often makes it tough to know exactly what you want. If you feel uncertain or indecisive when it comes time to make important choices, you may end up struggling to make any choice at all.


Things that can help you define your sense of self

  1. Think about what your core values are Now. Not what they were. And think about how to align your life to live to those values
  2. Make your own choices. Do not neglect yourself. If you neglect your own needs you have less to offer others as well.
  3. Have some alone time. And use this time for your own self-exploration. You can explore new hobbies. Read new books. Try out volunteering. Start keeping a journal. Start a meditation practice. Explore new passions.
  4. Consider living to your authentic self. Not your preconceived notion of who you are or were. “Older research suggests that differences between your ideal self (who you envision yourself as) and your actual self (who you really are) can contribute to feelings of dissatisfaction, even depression. In other words, knowing who you are may not be enough, though it’s a very good start. Failing to honor this sense of self could have a negative impact on your emotional health. Once you have a more firmly defined sense of self, consider what you can do to align your life with your identity. You might, for example, ask yourself what changes you can make in your professional life or interactions with others.’
  5. Define what fulfillment and happiness mean to you specifically. Not society. Not others. For you.
  6. Take responsibility for yourself-not others. It is not your job to make others happy all the time, save everyone, please everyone, be friends with everyone. Define boundaries. Be capable of saying ‘No’

See also: How to build a stronger sense of self

It isn’t something we can fix with the snap of our fingers or in a day or two, unfortunately. This one takes some time. And thought. I have been working on it for a bit. Just bit by bit. Partly I think it is getting away from that Chronic Illness Identity. And one way I did that was really to stop going to a lot of chronic illness Facebook groups. I found most of them were not helping me. Most of them had no helpful, beneficial coping strategies. It was just a place to complain, which don’t get me wrong, has its place in a world where we have no voice and no place to actually say how we Feel and Mean about our pain and illness. And there is a place for that in groups. But within limits. And all that negativity just made me feel more negative in my outlook if I am exposed to it too much. And that isn’t the mindset I wanted to cultivate. In many ways, focusing on my passions helps me more than anything else. And joining groups about my passions makes me feel Good in a way that is beyond being ill and has nothing to do with being chronically ill.

Consider looking at these posts:

Our Chronic Pain Story: The Theme Part II
Chronic illness: Our sense of self
Chronic illness: Mood, happiness, and life satisfaction

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