Expressions of honesty as an act of defiance

I was talking to my younger sister today and made an off-handed remark about how I need to do some writing as I’m overdue for a new blog post, but I was feeling bored by myself and everything I usually write about, namely me and being sick. So Pam encouraged me to instead write a couple of paragraphs on a character I find interesting. So I thought I would try that. Even though I haven’t done that her prompt did get me started and it also got me thinking about language and the ways we describe ourselves. Or in this case, the language I use to describe myself.

I have already written a bit about how I have started to become comfortable using the term disabled to describe myself. It doesn’t mean I don’t still struggle with it, I do, but as a part of my identity it has helped me to hold myself in higher esteem, to practice pride. However I am realising some of the other ways that I speak about myself and my illness continue to undermine who I am and my value in the world. Boredom with myself and my illness is something I describe feeling quite frequently. But boredom is not actually true. Whilst I do at times get bored of being sick, there is more going on than that. In looking closely at this I have found that behind the boredom there is a sense of shame. I have started to recognise that by describing it as boredom I am in part trying to make myself smaller, to not be as visible, and to not draw attention, to not speak out or speak up. I feel self-conscious, I feel ashamed still and worry that people will get sick of me writing and talking about being sick. The truth is that whilst I don’t want this condition to be the key focus in my life, I really do want myself, and society in general to get a lot more jiggy with sickness and illness as a whole. I remind myself is what I am doing here. Practicing pride.

This sense of shame, mixed with isolation is something I still struggle to explain. It is the feeling of not quite fitting in, of not quite being welcomed or belonging in the world outside of my own home. I know that it is because in part I am still prejudiced against myself- against being sick. It is also because from a very young age we all (grand statement I know) are taught, both explicitly and implicitly to reject illness (and by way of that people who are ill). Of course I don’t think we do this consciously, but it is the message we learn anyway. Illness, disease, sickness are things to be avoided and in a way it makes some degree of sense- no one wants to get sick so it seems a good idea to keep away from sick people. However whilst I am in no way contagious- I still feel like people would be more comfortable if I stayed home. And in a way I would be more comfortable too. I would be more comfortable if I didn’t need to interact with others, or come face to face with looks of concern, or comments or questions on how I am feeling, or what might be wrong. It is not that people are rude, at least not intentionally, it’s just that most people are not overly comfortable with someone presenting differently or in obvious pain or discomfort. I know myself that if I see someone who looks uncomfortable, whose face is a bit scowly or tight, whose mouth is tense, jaw clenched, then I will ‘read’ that person in a particular way, and not positively. And so I wonder at times, about how people might ‘read’ me. I don’t always feel self-conscious- but when I do it tends to be linked in with attempts to deliberately try to push myself into areas that I would normally feel uncomfortable in or where my impairments might be more apparent. It could be going to a social event, other days it could simply be deciding to go for a walk that leads me feeling this way, other times writing a new post. Rarely does anything specific happen to set off this feeling, it just bubbles away and sometimes comes to the surface when I feel vulnerable and exposed. And being sick often comes with feeling vulnerable and exposed.

I attempt to push through this feeling most of the time. Usually I do pretty well, and after a while it drops away. But then at other times, like at the moment, this feeling just lingers about me, and can even grow so I feel more and more uncomfortable, and less at ease within my own skin, and within the spaces and places I find myself in.

To challenge myself, my shame and self-prejudice this week I tried walking through the shopping centre with my pain face on. I usually try to hold my face in a neutral or pleasant expression. You know like they teach in meditation, a soft smile on the lips, an unfurrowed brow. I try to look calm, kind, relaxed and like a nice person. I want people to think I am a nice person. I think in part this is because I am aware of how quickly I have judged people in the past. These little ways of reading people are often so very false and biased. My pain face is not pleasant or neutral, my pain face is the face of someone in pain. I was in pain and I had run out of energy and the desire to hide it. I no longer wanted to apologise for being in pain. Because in a way every time I try to hide my pain that is what I am doing, apologising for who I am, a person who is sick, and for how I feel, that is uncomfortable. I am trying to hide a part of me. It is not the best part of me, it is not a part of me that I even like, but pain shapes my days a lot and I am realising that trying to look unpained is exhausting. And unnecessary. And is a waste of energy. Energy that I do not have.

It is also hard because I will often be complimented on the fact that even though I am in pain and have a chronic illness I am still smiling, happy and seem to be in a good mood. And I am a sucker for compliments-even the meaningless ones. The doctor I saw last week seemed to be so pleased that I am remaining positive and upbeat. That I still had a smile on my face. Why do I feel proud of this, proud of being able to grin and bear it, of not letting my circumstances get me down.

I have a picture in my mind’s eye about how a person who is kind, calm and wise looks. And the picture in mind is that of the Buddha. Back again to the meditation instructions, to the remarks also during yoga classes. To the comments from patronising people- smile!! Smile- if not told directly it is fed through the stories we are told, through the tropes traipsed out again and again. Good people look pleasant- the unkind don’t. What strange, false and harmful notions I have bought into. It is only now that I see my own reflection, that I see my own scowl, that I see myself struggle to sit up straight that I realise how embedded these ideas are. The graceful coordinated movements that I once prided myself on, the posture of a dancer, strong, fit. I didn’t realise then what a privilege health was.

Small acts of defiance for me this week include being prepared to show how I feel, to show my discomfort, my pain. To show my frustration and my concentration as I move, walk, stand and sit. Public acts of boldness, being real. Expressions of honesty. This is my activism. I will not try to hide how I feel.





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