There are things that are that just shouldn’t be. Things that, in my opinion, no worldview can clearly give account for. Disease is one of these things.
I’m yet to hear of an explanation that would make me think “yeah that makes sense” or provide me with that “ah ha” moment. Nothing can adequately explain away the mystery that is disease and I think it cannot be made sense of no matter how you try to reason with it. I’m not talking about scientific or medical explanations but just an explanation as to why. What is the point? In my little imagined utopia, sicknesses wouldn’t exist. The heartbreak, fear, embarrassment. I find it hard to reconcile anything positive with suffering in our bodies. However, I do recognise that it is just a natural part of life, despite how unnatural it may seem to me.
Tony Kushner’s ‘Angels in America’ was my first insight into the HIV/AIDS epidemic in such an artistic way. The play does a good job in portraying the pain and confusion the crisis brought as the characters tried to navigate their way through a mysterious disease that no one knew anything about.
I remember being particularly interested in the response to the disease at the time and finding out that it was classified as a ‘gay disease’ or some sort of cosmic punishment. It sounds archaic and weird but my mind goes to the start of COVID-19. The myths about the causes sounded similar, they either profiled communities or made it out to be some sort of inside joke or punishment crafted by the powers that be.
Something that is interesting about this pandemic is it has shown how connected the world is as we all feel the effects of it. However, I still think it is a too simplistic assessment of the pandemic to claim that we are all affected by it equally. I’m thinking about people who live paycheck to paycheck and have lost their jobs. Or people in the poverty capitals of the world compared to the few countries that actually are handling this pandemic well. In the same way, I think that there is a disparity in how disease affects marginalized people either by stigmatising them or by the treatment they receive.
One of my most poignant memories of church as a child was me wandering around after service and barging into one of the rooms in the building. There I was this embarrassed little girl looking up in curiosity.
I had obviously interrupted something but it took me a while to realise what. It was my mum and some other women huddled around my brother, they were praying for him before I interrupted mid-sentence. Around that time he had developed weird patches around his body that seemed untreatable. After many hospital consultations and different creams brought by family friends to soothe my mum's desperation, nothing worked. Things were getting worse and after months of worry and pain. These mysterious patches were later confirmed to be eczema. Eczema. Till this day I always wonder why no qualified professional could detect something apparently so common.
About 13 years later I had a similar experience which led to me being prescribed the wrong medication for a rash. The steroids in the cream ultimately caused unnecessary inflammation and prolonged the healing process which left me with a massive scar. I remember thinking “I followed all the right steps, I sought help on time and didn’t self medicate” but something still went wrong. I’ve heard more stories like this about patients not being listened to or having pain minimised and I’m not surprised as to why I’ve seen a lot of people resort to religion for healing as opposed to healthcare professionals.
I know a lot of people who have been failed by healthcare systems in one way or the other. I know human errors happen but I also think certain groups of people have been neglected and forgotten about in trials, in teaching manuals and in practice. I do think certain communities are forgotten about and otherwise not cared for adequately.
I think it’s important to reshape how we understand illnesses. I’m hoping that moving forward post-pandemic, we can adapt a more empathetic approach that does not attach unnecessary meaning to illness or stigmatise certain groups because of something that cannot be controlled. My hopes are particularly geared towards better treatment. My encounter wasn’t life-treathening, it can actually be an interesting conversation topic when people ask me about my scar. However, I know people who have been seriously impaired by similar mistakes. I’m thinking about people who have been shamed for their ailments or their disability and have also been let down by professionals on top of everything. I see a growing skepticism, particularly in my own community, of medical treatment and I can understand how history can support these fears but this shouldn’t be the case.