By Nikita Chadha
I’ve always struggled with holding two opposing truths at the same time. Even as a child, I was labelled as “all or nothing” or “black and white” – seeing grey doesn’t come easily or naturally to me; it never has. I wonder if it ever will.
I’m a disabled person. It took me a long time to associate that word with myself, to see myself in it. I always thought I was taking up space that didn’t belong to me until I lost control of my body and mind. That breakthrough felt like a day of reckoning. I realised how much of my mental health I’ve normalised and how long I’ve experienced certain emotions or symptoms that other people don’t. I’m envious of other people and how easy it seems for them, how they can name emotions and not become consumed by them. My hypersensitivity is seen, especially by those who understand its severity, as a weakness—a flaw. I used to believe that too. Sometimes I still do.
Being out of control feels like a dangerous space for me to exist. But that’s all that life is, really, isn’t it? A collection of moments where we feel out of control and like we’re free falling. When your health takes a turn, you feel like your old life no longer fits, and when you experience unexpected moments of tragedy. Not too long ago, my mum experienced a significant health crisis. None of us saw it coming, and it was severe. I felt like life was jolting me awake, testing all the progress I thought I’d made in the last few years with ongoing mental health interventions.
I live with conditions that aren’t respected by the medical world. They’re underrepresented, under researched, and generally minimised: two are even on the NHS’s most 20 painful conditions. Living with Endometriosis, Adenomyosis, PCOS, and Sciatica comes with endless medical gaslighting and residual trauma stories. Ask anyone who lives with these conditions, and they’ll tell you the same. It’s difficult, at best, to trust a global medical system committed to misunderstanding you – one that doesn’t even see people who look like you as people. I find it difficult to even attend standard medical appointments after the battle to be diagnosed – it’s like I become a child in that environment like I lose complete sight of who I am and what I’ve come through. It’s not just doctors either; you’d be shocked at the lack of empathy or understanding if you’d heard comments even close friends have said.
When my mum was in the hospital, I had never been so actively worried in my life. As a reasonable person, I feel expected to be happy or grateful that she was receiving medical care. But that care takes part in a broader system known to discriminate against anyone who isn’t a cisgender, heterosexual, white male (even now, in 2022, they are still the medical standard). Friends and others try to offer me comfort and say, “she’s in the best place she can be,” and whilst that may be true, how do I hold and accept the truth that I must trust an institution that I know is biased against people who look like her? That I must ask an institution that has directly caused me harm to look after the person who I love the most in this world?
There was a 24 hour period when we couldn’t see her or contact her. We’d been told she’d been rushed into emergency surgery, and I’d never experienced time move so slowly. All I could think about were the glaringly obvious health inequalities. How older South Asian women like my mum have been conditioned to minimise their experiences and what the consequences could be. What if the person treating her is biased because of how she looks? What if she exhibits a symptom that isn’t the same as a typical white male (let’s be honest, we know who we base most medical symptoms on) – what if her pain isn’t acknowledged, or she’s denied care?
Was this a reasonable experience? Or just a natural part of what disabled people go through and how they have to rely on systems that have almost broken them? I don’t know all the answers to these questions, and maybe I don’t need to. My mum is OK, as it stands (thankfully) – but I did think to myself afterwards: what an incredible privilege it must be not to have to consider how different parts of my mother’s identity could impact the healthcare she receives. But, of course, if you’re from the majority, especially racially, you don’t have to think about it: the ruminating, the opening of your own medical gaslighting wounds. You wouldn’t recall instances where race directly impacted your experience and knowing that the data and statistics support it (when they even deem us necessary enough to gather our data – but that’s another story).
I know this is something that will disproportionately affect intersectional people. The impact of intergenerational trauma, racism, and migration are things already acknowledged as impacting physical and mental health factors. Black and South Asian communities are more likely to be diagnosed with certain illnesses in the UK, like cardiovascular disease, and that will need immediate medical intervention at one point or another. I don’t know how anyone holds these truths without blind faith, knowing that the odds can be affected and that it lies entirely out of our control.
I’m not used to writing like this. To have all loose ends floating around, to have no clear resolution for myself or whoever is reading this. Guess it’s a work in progress, like holding these two opposing truths and holding them well.
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