There’s an adage about how we learn who we truly are when faced with difficulty. Of course, there is truth in this, but we don’t really talk about the flip side; how we face a difficulty is determined by where we are in our lives at that point.
This past year, I’ve often wondered about how I would have dealt with this chronic illness if it had happened to me earlier in life – would it have been easier because I was younger, or would my immaturity have stifled my ability to cope? I was my fittest self when this started, and that frustrated me more; it wasn’t just a question of ‘why me’, but also of ‘why now’? Why didn’t it happen when I treated my body like an immobile fast-food storage container?! On the other hand, I’ve been told that I should count my stars that it happened when it did because my body was able to deal with everything it was enduring.
Now, with a diagnosis, validation, and a semblance of a plan, I have a path forward. The relief of having a doctor tell me that what I have been saying is true and real is indescribable. I feel like I can move forward with this illness, almost like I am ready to take the next step in this relationship with Meniere’s.
As someone who seeks external validation (don’t get me started, I know it is a problem, I am working on it), I’ve obviously deep-dived into reading about chronic illnesses. I’ve read medical studies, non-fiction, and fiction, trying to understand how others with these illnesses deal with them. The latest obsession, and the point of this ramble (I think!), is figuring out how to overtly express the symptoms of an invisible illness without seeking pity.
On reflection, I have recently realised that I have sought pity. I know, this does not make me sound good. But, when this suddenly happened to me and even doctors would not tell me what was wrong or believe me, the need to be seen was paramount. So much was happening inside my body that I didn’t understand and I was terrified, and no one could help. I began pitying myself, something I’ve written about earlier, and craved for that validation from outside.
I’ve settled into the illness now. To a large extent, I know what it is going to do to me, what my ‘bad days’ will look like, and I brace myself for it. I have learnt how to hide my symptoms, mostly because I am bored of talking about it. Every two weeks, like clockwork, I breakdown, wail, wish death upon myself, and then press the ‘refresh’ button.
Two things I still struggle with – ‘imposter’ syndrome as a person with a disability, and finding that right ‘spot’ to express my illness without it becoming performative. These two things emerge from the same point of caring too much about what other people think. While speaking to a close friend after my first time out on my own, I told her I was worried that people would think I was pretending to be sick by using a walking stick because I don’t ‘look’ disabled. It’s crazy because it’s tough enough having to figure this whole new, life-altering thing as it is. Why, oh why, must I add this unnecessary, ridiculous layer to it? I can hear myself say, ‘I think that they think that I am not sick’. *eye roll* So, what do I do? Naturally, I hide my symptoms even more. Appear ‘normal’, hang out late when I am exhausted, sit up when I want to lie down, and pretend like I am listening when the ringing in my ear is deafening. (Family, biological and not, reading this, please do not start asking me about this the next time we meet!)
People react to illnesses differently, especially when they take care of you. M, initially, would smother me by being overprotective – constantly watching over me, never letting me do anything by myself. Appa and amma have struggled with this too, scared shitless about me staying on my own, even if only for three days. But, they’ve found that balance now I think, and to some extent it has to do with the way I treat myself. I can function while feeling dizzy. It’s not the end of the world. Most of all, I’ve learnt to do the hardest thing – ask for help.
I don’t know how much of learning to maneuver (pun intended) in society with this kind of chronic illness has to do with the development of the illness itself and how much of it is the manifestation of my own ‘imposter’ syndrome in this new facet of my life. I have this image in my head of how I want to be with this disability in public – a badass! Someone who can walk with the cane when she needs it without feeling apologetic or conscious about the stares.
It isn’t only about the words, but the tone of your voice as well. The voice that comes out of my mouth and the voice in my head. Maybe the ringing will drown it out.
Article by Roshini Suparna Diwakar