“To Be Chronic”
Every so often, when things get bad again, I get frustrated and impatient with myself. I think that’s the part of me that wants things to be different for me, better. Someone I love likes to remind me about how hopeful I am as a person and I struggle to believe this because I think of hope as a feeling you hold and I’m not hopeful that things can get dramatically different from how they’ve been – which in my short life includes a great deal of difficulty. With time, I’ve been able to see that I do live in a hopeful way: always making sure that my life is full of things that make me feel possible again, close within reach. I now also believe that my surprise with myself in every period of overwhelm, is a way my heart holds onto hope that things could be different this time: it could be a bout of something else. Yet I always find myself here, where we’re fighting to determine what it is this time – the grief, depression, iron deficiency, existential dread or simply a bad couple of days.
Even though I’ve been chronically ill for half of my life, I somehow always forget what that requires of me, especially when I need it the most. It’s the very same part that can’t reconcile the unending nature of this. That to be chronic is to be in this fight forever, to be doing this delicate dance with living forever. To be incurable. Forever is a long time and this is the only context where I sit truly with what that means, how vast and out of my hands, beyond my sight it is. My failure to wrap my head around this is possibly because I can’t or won’t be able to. My relationship with the word ‘chronic’ has been the most turbulent. I don’t do well with surrender and I’m not sure who is the chicken and the egg in this scenario.
I vividly remember the first time I had a symptom that marked the beginning of this endless journey of tests to make sense of what was going on for me. I remember hiding my first couple of episodes because I wanted it to remain unreal for a bit longer. When I think back to that time, I remember the fear that clouded everything and feeling like I was losing myself, something core to me, because in many ways it did feel like what I imagine death is. It was the first time I felt far from myself in a tangible way, it was real this time because things that people could see and confirm were verifiable. This had come after the drifting I had learned to do to survive some of the difficult parts of my childhood. So when the very real experiences I was having in public began to be questioned, I began to fight for my pain to be seen. I started this process of rationalisation to demonstrate that this is not something I could possibly want. I learnt to quiet this internal scream that was seemingly more disruptive to everyone else & the more I tried to make it stop, the worse it got. It got tiring and it hurt almost all the time, everywhere but the only place it was allowed to hurt, was within and so it did. I learnt how to hold it in my throat, allow it to go back in and dissipate into the crevices of my body where I could hold them till it was right time to release.
Each time I talk about one of my diagnoses with a person I love, their eyes turn from a keen stare into a longer, more concerned one. When I started to talk about the bipolar, getting on medicine and the coping mechanisms, side effects, six week reviews and psychotherapy, they asked whether I felt the diagnoses was accurate, whether I was afraid of the medicine and then I watched them grapple with the realisation that I’d have to be on the medication forever. Many conversations later, another friend asked whether all the effort I put in, helped. I think about that often, not the question itself but how much it takes to keep going, for everything to work or help, what this even means. After a while, in another context, he asked if the despair ever ends, if the helplessness leaves. “It doesn’t”, I said. When I started therapy though, I thought it would eventually take all the pain away and that’s not it because here we remain and still return to – chronic.
-Anonymous