When Being Sick Becomes Your Identity

Just a few months ago, a new practitioner asked me what I’d do if I weren’t sick.  I froze. A feeling of emptiness washed over, as I glanced at my partner, panicked.  We waited in silence while I tried to grasp onto ideas, but nothing felt right.

As a teenager, I’d always planned to do something creative and physical, tracing back to dreams of being a photographer or even starting an organic  farm. I thought more about my post-college plans to pursue work in some kind of helping career, something involving movement-based therapy or mental health counseling…When I thought more about her question, I started imagining what I’d like to do outside of work if I had no limitations…Perhaps an adventure with my fiancé to romp around in the wilderness and soak up the beauty of Oregon… I imagined feeling energized and sturdy, traveling to visit my friends from college for a reunion in a cozy log cabin in the woods of California.  I could see us all smiling as we hiked to skinny-dip in rivers, picking wild raspberries, and staying up late to play board games, paint, and read by the fire.  

As I thought more, I realized that what I wanted to do and feel most would be to simply wake up and not feel sick; I wanted to exist without fighting to exist each day. However, the idea of thinking beyond that barrier felt like I was intentionally teasing myself.  

 The jump from my current reality, sitting in her office, to an ideal version of the “healthy” Theresa a few years down the line felt like crossing a desert wasteland with no safe or imaginable way to do so.  No route and no map. A dark emptiness and doom filled this infertile void. This body couldn’t handle any of the things I truly dreamed of, I thought, so why bother teasing myself with such wild and unfeasible desires, when just getting through the day without tears felt like a huge accomplishment?

She then asked what I liked to do for fun.  I chuckled, thinking how I spent all my free-time outside of seeing friends to cook, go on walks, or research. As I answered, I realized most of my responses were tied up in either attempts to feel better, like exercising (despite cues from my body not to), and clinging to activities (like hiking and cardio hip hop) I used to enjoy when I was more able-bodied, but that later felt pretty dismal and intensified my awareness of how depleted I felt in my body when attempting to do such things.  (I can proudly say I’ve learned to stop pretending to like treading through the scorching deserts of San Diego. I choose to stroll through the shady neighborhoods instead. Instead of cardio, I dance around my apartment when the urge strikes.)  

As I reflected on my lack of hobbies, I noticed that I’d  forgotten to include delight for the sake of delight in my daily routine. In my attempts to heal myself, I had unintentionally replaced fun with research, lightness with seriousness, and playfulness with despair.  I had shifted to only surviving (although sometimes it felt like even that was only suffering), leaving little room for exploring the other aspects of what it means to be human, namely creativity, play, connection, and purpose.

In all honesty, I couldn’t imagine a time when I wouldn’t be sick, and didn’t realize that in itself has become the major problem.  My brain had unknowingly normalized sickness as it’s normal mode of operation. I stopped imagining the future and therefore, stopped working towards a time when things might feel better.

I soon looked at my daily schedule in a heightened level of horror, realizing my entire day revolved around managing (and researching) my symptoms, going to appointments, recovering from those appointments, grocery shopping, recovering from grocery shopping, food prepping, and by nightfall, laying down in a pile of exhausted defeat as I looked back on the day and reluctantly looked ahead to tomorrow.  I had gotten so used to just surviving, which looked like dragging my heavy body from task to task that I actually could not visualize a future beyond what had grown to be my normal, slightly horrendous existence.

I started to ask myself, what would I be doing, if I didn’t have any restrictions?  How would my day ideal day look? What would I spend my free-time doing? What would I do before work? What kind of person would I want to show up as?  How did I want to feel as I moved through the world? What would matter most, when I look back on my life as an old, wrinkly, and (hopefully) satisfied woman?

 The questions piled on, intensifying the fact that in the midst of managing, I had forgotten how to be human, but gosh darn, it was time to remember.

Anyone living with chronic illness or invisible disability can surely relate to the feeling of how just being unwell and feeling worn down day after day starts to consume every thought and action.  Yet, that’s the exact trap that keeps us sick! It’s not surprising that we aren’t getting better when we aren’t reminding the brain that it can get better. There is a shift in perspective necessary to heal.

Training the brain to think about things unrelated to health and bodily sensations of discomfort and to instead learn to reconnect with delight marked one of the most rewarding changes of this year.  It requires awareness of my thoughts, how they feel, and shifting my attention to the ones that feel better. Continually shifting and choosing new thoughts, new actions, I slowly molded my identity to encompass the vital version of my ideal self.  When intrusive thoughts take over, I continue to practice honoring them and replacing them with new thoughts that align with the healthy me. At first, it felt bizarre and even disingenuous. With time, it began to feel easier to have the lighter thoughts appear without effort. 

Brain rewiring is now a daily, moment-to-moment commitment.  

Upon waking, instead of getting swept away by fear when my brain starts scanning for physical discomfort, for example, I start listing all of the aspects that I appreciate in my life.  I lay there, smiling under the covers as I snuggle into my partner, appreciating the silky goodness of my sheets, the tea that is beckoning me, the music waiting to be danced with right after  I turn off the fan and let the sun beams shine in.

In terms of resurrecting delight back into my day, it required reconnecting with what I once lost track of time doing.  It also required halting any medical research and unsubscribing from health related content for a while, as that had found an interesting way of increasing my sense of doom and continual overwhelm.

I squirmed (and still squirm) in discomfort attempting to do things just for fun.  This is slightly humorous to me; I think of how confused a 6-year old might be if I tried to explain to them how I’ve forgotten how to play. But the more I dug into what truly felt magical and inspiring, the more I remembered.  

For me, the delight surfaces when I’m reading juicy novels or an article in the Atlantic while marinating in the sunshine.  It envelops me while I’m watching movies with my partner, or even just laying on the floor listening to harp music. It surrounds me when I’m doodling, singing, or surrounded by trees.  I have always coveted my alone time, but recently have noticed how inspired and light I feel in the company of others, especially when we’re relaxing outside.  

It is truly a privilege to rebuild myself and teach my brain to access delight, infusing creativity and a sense of meaning back into each moment.

When I continue to ask myself what I’d do without restrictions, I find myself believing I’ll get to play in the mountains I dream of with the people I so dearly love, that I’ll actually have the vitality to chase down the dreams I unintentionally wrote off as impossible. I’m learning to visualize a future where I feel energized, vibrant, capable, connected, creative, and generous, supporting and reminding others to feel the same. 

 I remember how short life is and how much joy I can extract from each unique moment by remembering to access delight.

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