Self Compassion Through the Eyes of Illness

During a session on self compassion at The Satyarthi Fellowship, we were asked to do an exercise.

First, write down what about yourself makes you uncomfortable. Second, turn what you've written into third person. Third, write what advice, comfort, or input you'd give that person.

The point of the exercise was to show us how we are more mindful to others’ suffering than we are to ourselves, and how self compassion is generally lacking in people.

During the first part of the exercise I wrote mainly about my body. 

I really dislike the way my body functions and I deeply wish it allowed me to do more. I feel frustrated a lot and very limited and since the suffering is ongoing I can never truly get over it. It's completely defined who I am as a person and how I function and how I look and how I feel and I hate that.

After the exercise, people talked about feeling more connected to themselves, looking at what they'd written more objectively, and feeling their problems were more manageable.

Talking about the self means something different when your body works with you.

I sat there feeling a growing sense of isolation. After a while I excused myself from the session. This definition of self compassion and way of teaching it did not work for who I am.

My Relationship With My Self

In my experience, chronically ill people self-reflect a lot. The mind becomes one of the places where one can sit when the body becomes a dangerous place to inhabit.

In the last couple of years I've been dealing with my relationship with myself, and reworking how I define my value. I realised I hinge my worth on productivity, and as someone whose capacity fluctuates, a bad week or month could deeply unsettle how I perceive myself. That way of judging myself had caused me to have to rebuild myself more than once, when over time what I could achieve, the work I did, or how other people perceived me changed.

And so a few months ago I did an exercise. What holds true about me even when capacity, circumstance and the people around me fluctuate?

The first line was this:

I show integrity and courage. I act on what I care about, including when acting costs me.

That exercise helped a lot. The idea was that when capacity fluctuates and when I have a bad day, I can refer to the list and remind myself who I am beyond productivity.

When Identity Fluctuates

It holds true, in some contrast with the above exercise, that much of who I am and became is influenced by living in a chronically ill body.

I care deeply about the suffering of others because I have experienced suffering. I simultaneously struggle to empathise with others at points because able-bodied people experience the world differently than I do. I spend every day negotiating with my body and seeing what is possible and what is not. I miss out on things I want to do because I know what it may cost me. I gain weight because of my medications and inability to exercise, and harshly judge my appearance at times. I do not believe in god, as I cannot hold the contradiction of a benevolent being with power and the continued pain of the world alongside my own. I think and overthink every aspect of my existence and question my purpose.

I change over time because of my illness and its progression, and wonder who I am away from that, who I might have been. 

Self Compassion & Where It Breaks 

• Self compassion in Karuna by Nobel Peace Laureate Kailash Satyarthi is defined as objectively seeing, feeling and alleviating your inner suffering through mindful action, without self-doubt or self-obsession.

Where this breaks: The model assumes suffering can be solved. My body keeps producing suffering. Mindful action cannot remove that.

• As per the book, the self compassionate person feels their suffering deeply but keeps a distance from it and refuses to merge with it; that distance is what makes them a problem-solver.

For me, it is not possible to truly separate my sense of self from a body that drags me back in due to pain and fatigue.

• In Karuna, a person is made of three selves: how the world sees them, an inner observer, and the person they hope to become, free of inner suffering.

An aspirational future self is often built on an able body, and measuring against it produces guilt and shame.

• A recovery arc is followed in the book: something happens, you reflect, you find closure, and you get your future back.

Suffering for me is ongoing, so I can never truly get over it. The research term for this is nonfinite loss (Bruce and Schultz): loss that keeps happening and has no endpoint. The older term chronic sorrow (Olshansky) describes grief that comes back again and again instead of resolving. Michael Bury called the arrival of chronic illness "biographical disruption," meaning the story you expected to live has broken.

• The book cites Kristin Neff, whose model includes "common humanity": the sense that your suffering is shared, and so you are less alone in it.

The exercise we did depended on common humanity existing in the room. When everyone else's discomforts had solutions or felt smaller and mine did not, the exercise produced the opposite, so feeling alienated was predictable.

What I Said to Myself & What Works

She needs to be less hard on herself and work on self acceptance and work less from a space of guilt and less from the lens of productivity. The world is more than what you achieve and it's okay for her to not be who she thought she would be - she can be someone else who is still worthy of love, care & respect.

The book ties self compassion to effectiveness: better leaders, better problem-solvers, more service. My words to myself worked on my earlier exercise, separating who I am from my productivity or output.

This is closer to acceptance-based approaches and disability studies. A version of self-compassion that works for chronic illness needs three things: permission for suffering to stay unresolved; grief treated as recurring; a future self that is not measured against a body I don't have.

There is research, including work in Neff's tradition, finding that self compassion is linked to lower pain catastrophising and better adjustment in chronic pain.

However, the dominant way of teaching self compassion assumes a body and a timeline that many people don't have.

From the first part of the exercise that day:

I wish my resilience didn't get channelled into daily survival and that I could use it for more instead.