I have thought a lot about self-identity and chronic illness and worked on it with myself for some time with illness. I have been chronically ill since I was young but more so since I was 20 and then on full disability in 2019. I have thought about my sense of self, my self esteem, my self worth. All these things. Worked on all these things.
“When confronted with existential anxiety or identity conflict, people attempt to cope and regain a sense of authenticity by engaging in a process of meaning making (Ownsworth & Nash, 2015), which according to Christiansen (1999, p. 552) happens through “selfing” or, in the context of this study, through identity work.” Source
The main struggle I have had recently and starting in 2019 ongoing to now in fact has been disability. I struggle to hold onto my mindset and the resilience I had developed. I tanked hard and that is why I went on disability in the first place. And it was difficult to cope with that level of lower functionality. I stopped writing this blog for a time, and came back under this new name. (Previously Brainless Blogger). I could not write. I could barely do anything at all. Slowly I regained some things but it took a lot of time and effort. And I have to pace for energy in ways that are extremely difficult with the level of fatigue I have. And have problems with energy that mean I have a very narrow window of functionality. And mobility problems that make it difficult to walk further than 15 minutes. Re-gaining some things somewhat and then losing other functionality.
When you lose a lot of functionality all the work you did on who you were as a person and your sense of self collapses again. Who am I? Who is this person? How do I define myself in the face of this chaos?
Self-identity is fluid throughout our lives
Our identity is a fluid thing that changes over the course of our lives. And I have to be very careful not to change it and define it based on something negative. Some sort of chronic illness story I have written in my brain that limits all my capacity to be in the world.
Not defined my disability?
I am not defined by my disability. Or am I? This question plagues me. I certainly wasn’t defined by the work I did before. So I have to be careful to understand I am more than these things that are a significant part of my life. And they are. Disability is a limitation, a challenge and a lifestyle all rolled into one. But it is not my self-identity?
It is not
- What I used to do for a living
What it is
- My care values which may have evolved over time as they do
- My defining traits (introvert, creative and so on)
- The roles we value in society and take on (daughter, sister and so on)
And certainly from there you do focus on what you can do and not what you cannot do. And the activities you do value. And how you can do the activities you can value.
I said in my pervious post on self-identity “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. Being authentic to who you are. Who you think you are. Your personality and concept of self, promotes a healthy sense of self. And this is beneficial for our self-esteem.”
The problem
I agree with all of that but being my authentic self through symptoms has become this problem. Pushing through this wall of symptoms to try an manifest who I AM. And failing.
Re-grieving
The grieving process of who I was never seems to end because illness is a fluctuating beast. Leading to me grieving who I was just recently and then before that and before that. Just a small loss in functionality and the process starts again.
Loss
The sense of loss. Loss of functionality. Loss of mobility. Loss of so many things can haunt us and diminish our self-worth and sense of self.
Disconnection
I can feel disconnected from my self and certainly from others. The isolation is profound. Without of drivers licence and friends far away. But also the disconnect from self as well, with the floating lack of purpose and so many symptoms interfering with any act of will.
Reconnecting
I think the problem is that I do not see the disability as part of my identity when as I said above it literally:
- A limitation
- A challenge
- And a lifestyle
It causes my values to adapt and change.
It causes me to adapt to how I do things and how I do my hobbies.
How I move my body in the world and when I choose to move in world.
Some of the traits I value in myself I value because they help me cope with my disability and chronic illnesses. Like resiliency.
So as I recover self-identity I have to understand that part of my self-identity now is being disabled in the world. It functionally alters how I live, my lifestyle and how I view things.
Ideal self
We are who we perceive ourselves to be. While trying to ask Who am I now? we may just not know but knowing that the self is fluid we can come up with who we want to Be. The characteristics we what to embody and exemplify in the world. And then we can then act on those characteristics. The more we do that the more we become that.
“In reflecting on their broken selves, the participants began to make meaning of their illness experiences by expressing identities aligned with a self-constructed identity standard, expressed as ideal selves. The participants’ ideal selves were particularly reflected as being self-sufficient and self-determined (Fiona and Dwayne), being regarded as worthy (Dwayne), and having meaning and purpose (Dwayne and Dinah). To embody their ideal selves, participants engaged in reconstructing their identities through Frankl’s (2008) meaning-making pathways.” Source
Meaningful self
Whether we are guided down this path with the assistance of a therapist or we do it ourselves we can slowly, willfully reconstruct our identity. Write down ten traits that you highly value in yourself. Write down ten traits that you want in yourself. Think of ways to do things that embody all those traits in the world. Even small things.
Meaning comes whether we want it or not. Self-identity changes and adapts whether we want it to or not.
I need to guide mine though.
Because it has been taking a nose dive and I am quite aware of it. A sort of existential crisis of who am I with this disability? Who am I with this functionality? So I am aware I need to do this work. I need to create a self identity that embraces who I am now as well as the traits I love about myself- and the traits I will embody to come- a create who I will become.
Chronically Nikki 
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