So this is going to be a bit hard to articulate since I have a migraine and vertigo at the moment. Sort of a tornado of cognitive impairment.

I have had a difficult time with my self-identity for decades. My sense of self has had to drastically change. It started when I was too ill to go for my Ph.D. and I had such a hard time getting through my Masters’. I did it. And my grades were decent. But I expended a lot of effort to get grades that were not good enough for me. And I knew I was getting worse, not better. I went into the workforce instead. And I struggled immensely for a decade or more trying to sustain a career and full-time work. And I failed. I had to go on numerous leaves and ended up part-time in a different role. And then on another leave with this vertigo on top of the pain.

Text: Chronic illness- Self-identity
Image: Close up of the half of a young woman's  face in black and white

So the struggle with self-identity is two-fold for me:

  • I put a lot of who I was in what I did for a living. I was an academic student on my way to becoming a professor. Then I was a banker. Then I was just a teller. My sense of who I was was constantly in flux and diminishing. Till it was ‘can I even hold a job part-time’. That was my new goal. And when I couldn’t do that… what am I then? If we are defined by what we do… what can I say about being disabled?
  • I said ‘I failed’ when I wasn’t able to physically or mentally do things. Just as I did in my explanation. So… it was me that was failing. I was a failure. And I didn’t acknowledge that my chronic illnesses, mental illness, and chronic pain were a barrier to achieving what I wanted. That it was my actual physical and mental limitations I couldn’t exceed without consequences. Not me, personally, as a failure.
  • And I lost those sense of traits I valued in myself. My intelligence with the cognitive impairments. My reliability with working made me ‘unreliable’. My strong sense of work ethic was no longer a thing I could say with so much absenteeism and presenteeism. All these things I considered important to my sense of self-hood were no longer my defining characteristics. To the point when a psychologist asked me to name 10 positive traits in myself… I struggled. Because this lose of self was also a loss of self-worth.

So what do you do when your self-identity needs to change?

  1. It is difficult. I was defining myself by what I Can’t do and not what I Can do. Because nothing I can do seems worthy to me. But truly our self-identity is so much more than what we can and cannot do. But the things I can do have value to me.
  2. I had to stop seeing these changes in my life due to health as ‘failures’ as a person. Because this crashed my self-worth. And I have to now work to build it back up. I am not failing at anything. I am determining what my limits are and how to live within them.
  3. I had to find traits about myself that I do love: I am still intelligent, I am creative, I am funny/goofy, I am introverted, I am very polite and respectful, I am non-judgemental. I am many things I can value in myself.

I want you right now to make a list of the roles you have in your self-identity:

  • I am a daughter
  • I am a spouse
  • I am a friend
  • I am a writer
  • I am a blogger

And all those roles in your life make up part of your self-identity.

And I want you to list 10 traits of your self-hood

  1. I am still intelligent
  2. I am creative
  3. I am funny/goofy
  4. I am introverted
  5. I am very polite and respectful
  6. I am non-judgemental.
  7. I am very loyal as a friend
  8. And this is where I get stuck. But I try this once and a while and maybe as my self-worth is bolstered I will come up with ten

And these traits are also part of your self-identity.

Add in your accomplishments and you have your sense of self.

And yes, after dramatic changes we struggle with this sense of self. And we have to remember 2 things

  1. Your identity is not defined by work. It is one role of many that make up who we are.
  2. Self-identity is fluid through our lives. We think once we become an adult it is static. But it evolves, changes, shifts, and adapts through every single person’s life. It is flexible. Who we feel we are now, is different than who we felt we were twenty years ago and who we will feel we are twenty years in the future. It grows with us and isn’t dependant on one thing we can’t do anymore. And it is going to keep growing depending on how we nourish it.

Your self-identity is a rich and complex understanding of your core self. Nothing can diminish it but ourselves. We need to nourish our sense of self and by doing so nourish our self-worth.

See also

Thinking some thoughts: Chronic illness, identity, and embodiment

My purpose

How does your illness define you?

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11 thoughts on “Chronic Illness: Self-identity

  1. Such an important topic, even if you’re not facing a sudden career change because of illness. I think some people struggle with retirement because their whole identity is caught up in their job, which isn’t a healthy balance, then they’re left with a void when they stop working. I always tried to maintain a healthy work-life balance but I sure struggle with the self-identity thing even now, three years later. Do I still get to call myself a teacher if I have no students, no classroom? Yes, dammit. And I’m getting more comfortable with the larger role that other aspects of my identity are playing. I like your reflection lists, I’ll give that a try and see if I can get to 10. Great post! 💕

    Liked by 1 person

  2. Hi Nikki, great post,
    I would add the fact that you are all you are, despite all your challenges. What you achieve is hugely impressive because you do so at the same time as hauling the weight of horribly debilitating illnesses. I like to use the analogy of the strong man pulling the truck vs the marathon runner. They are both really impressive, the truck puller doesn’t have to go 26 miles because it’s recognised that he’s pulling a weight!

    You’re not just a blogger but a very successful blogger, you write posts lots of people want to read. You also keep showing up no matter what gets in your way!

    Bottom line for me though is that we don’t really need self-identity if we can truly value ourselves (and all others) as unconditionally worthy. When that happens we are who we are in the moment, We don’t have to ‘do’ or prove anything. We know that by just ‘being’ we serve an important purpose in the world. I wish that for you very soon!

    Liked by 1 person

    1. Thank you, Julie! I have a bit of a problem with self-worth from how I thought about pain and trying to live with it. But I am working on that.


  3. I love that you say self identity is fluid. It is. Absolutely.
    Every few years, whether from being diagnosed, or no longer being able to work, or my marriage ending, my perception of self has shifted. I’m getting accustomed to being re-introduced, and learning who I am inside of every new context.
    For me, redefining success has been influenced largely by my faith and what God counts as successful, which is who we are not what we do. It has been helpful to see things from that lense as my body has become more limited.
    Excellent post, as always!

    Liked by 1 person

  4. I really needed this tonight. I was searching for others with cognitive disorders, and your post came up for some reason. I don’t think I’ve read that you have a cognitive disorder, but I see that you have chronic illness. I can relate to how you say your career has always been in flux. I have a diminishing work history as well, and it’s been destroying me emotionally. For supposedly being intelligent, I’m an underachiever, and things are getting worse with age. I’m so scared!

    I feel so guilty and worthless, blaming myself for many things that are out of my control. I have made some horrible decisions, though, and I am paying for them to this day. It’s hard not to beat myself up over those. Even mental illness my Christian fundamentalist family would probably say is more of a spiritual problem than anything. So all of the bad things appear to be my fault while I don’t take much credit for any of my good traits. I really don’t know what to do to cope with the changing state of my life.

    I read what you said about what to do if your self identity needs to change. I can read it, but somehow I can’t internalize it. I don’t know if I can change it. Self identity is fluid? Then why have I always felt so bad about myself?

    Your writing is excellent, by the way. I’m sorry to be leaving such a downer comment on your beautiful blog. Thank you for helping people like me. You’ve at least made me think about how much credit I’m taking for many things that are out of my control. Despite what I know of mental illness being chemical, I still blame myself to some degree.

    Liked by 1 person

    1. Self-identity is fluid in the sense that who we are changes over time, even though our sense of our core self doesn’t seem to change… but it does. It means if we have a self-identity based on low self-worth, which I really do we can work to slowly change that.

      Liked by 1 person

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