Why Are You Attached to Your Illness Identity?

How many times have you said, “I am sick” or “I am a Spoonie” or “I am in pain” or “I am depressed,” and so on? And how often do you feel that is really so? That is what you are? If your answers to one or both of those questions is “a lot,” then know you are likely not the only one answering that way. I rarely use those phrases for myself anymore because I find them unhelpful, but before you run away I want to explain why they are unhelpful. Not just from my perspective from my lived experience, but also what theories in Acceptance and Commitment Therapy (ACT) and related research suggests, particularly when it comes to chronic illness.

First I think I need to introduce you to a few terms. The first is event centrality. This can be described as the degree to which a person perceives an event (often traumatic but can also work for being diagnosed with an illness) as central to their identity. In other words, being a sick person is who you are because of your diagnosis. The second concept is the conceptualized self. This refers to who we think we are (in fancy ACT terms we call this self-as-content). The conceptualized self can take on all the identities we have such as being son or daughter, a parent, a spouse, a friend, and of course a sick person. It also includes our self-evaluations, so whether we describe ourselves as smart or dumb, happy or sad, fun or boring, and so on. What sometimes happens is that we get fused with one (or a few) of these aspects of our identity. In other words, we hold it tightly, are attached to it, and in the long-run doing so usually causes us more problems.

How do you conceptualize yourself?

Now this attachment to the conceptualized self can happen to anyone, and we often see it in depression and anxiety as well as chronic illness and chronic pain. There has been some research suggesting that our illness self-concept is a predictor of our adjustment to chronic illness. When we are attached to the identity of being ill we tend to have a lower overall quality of life. I talked about the use of language once on the podcast, and you should listen to that episode if you haven’t already. I want you to think about these pairs of phrases:

  • “I am anxious” vs. “I am experiencing the feelings of anxiety.”
  • “I am depressed” vs. “I am experiencing the feelings of sadness”
  • “I am sick” vs. “I am experiencing the symptoms of lupus” (or whatever illness you have)
  • “I am in pain” vs. “I am experiencing uncomfortable sensations”

You’ll likely notice that you attachment to that identity changes. And when we aren’t overly attached we actually can take better care of ourselves (health behaviours, self-caring, etc.) and our quality of life improves because we find we are able to do more values-based activities that we enjoy (yep, even with illness and pain). When we remove the attachment to our conceptualized self we are more willing to allow our experiences and see them as passing.

We want to have room to engage in values-based activities, because that’s what makes life meaningful.

There’s a few ways we can learn to do this. First, we can just start to notice and name are thoughts and feelings – “I notice I’m having the feeling of an uncomfortable shooting sensation in my hip” or “I notice I’m having the thought that I’m always in pain.” There are tons of ways to create some space between us and our thoughts and feelings when we are attached to them. This is just one way. The other process we can use to change this attachment to the conceptualized self is to develop self-as-context. This is what is also referred to as the noticing self. The part of us that just watches and notices all our experiences: what see, hear, smell, taste, touch, think, feel, do, etc. It’s a part of us that never changes. It’s like the sky and all of the thoughts and feelings and sensations are like the weather. The sky sees the weather but the weather cannot hurt the sky. And if you go above the clouds, the sky is still there, even when it can’t be seen. I’m going to encourage you to follow along with the video below to get an idea of what it is like to experience the noticing self.

I personally find this really helpful (and so do many of my clients) in creating a new relationship with my thoughts, feelings, and sensations, and forging out new identity, where I’m not limited by any of these things because I can notice them. They are not me. I am not chronically ill, I have the experience of having a chronic illness.

Keep making the most of it!