“During the 2004 Diwali season, when I was seven, I was diagnosed with Type 1 diabetes. My life has never been the same since.”
That is how I would begin if this were to be a very dramatic essay which intended to take you, dear reader, through a series of emotional ups and downs. I would tell you about a period of intense difficulty. And then it would all lead up to a glorious triumph of the human spirit. I would run a marathon, or perhaps get a scholarship into an Ivy League college, and there would be a metaphoric swell of orchestral music. The climax would be imbued with cathartic relief, and my diabetic struggles would be a thing of the past. See? I got through it! I did everything healthy, able-bodied people can do and now I’ll never have any problems again!
This essay would then fall into an easily definable category: illness narratives. Maybe you know what I’m talking about. Think about the last movie or novel you encountered about illness, or the last anecdote your uncle told you at a family wedding last year. It starts with someone falling sick. Maybe it’s something relatively minor: a broken leg, perhaps, or a bad bout of the flu. Maybe it’s something far more serious and long-term than that. And then they struggle with it, always maintaining their patience, their determination, their resolve to triumph. And then they fight, and fight, and fight, and then they emerge victorious, never to speak of it again!
Most of the time, though, that isn’t how chronic illness, or mental illness, or any illness works. That isn’t how any of this works. Which is why this is not a dramatic essay. I am not going to take you on a journey. There is no victorious climax. There is just life, and effort to live it as best as one can. Narratives like that present illness as an obstacle to be surmounted. You must battle your illness, the narrative seems to suggest, until it is no longer present. You can overcome it! Nothing is impossible! (And once you overcome it, for God’s sake, don’t talk about it anymore.)
When I was eight, I read the novel What Katy Did by Susan Coolidge. Like most 19th century children’s books (a genre I was oddly fond of as a child), this novel is so didactic that it all but hits you over the head with its moral. If you haven’t read it, I’ll summarise it for you: Katy is an average teenage girl. Taller than most, the eldest of several siblings, Katy is impatient and messy and the one most likely to get into some sort of scrape or the other. She gets into an accident and injures her spine, which leaves her bedridden for several years.
At first, she is impatient and angry about the constant pain she’s in, and then her saintly “invalid” Cousin Helen teaches her to be a “saintly invalid” herself. She becomes a beacon of patience and light, recovers from her injuries and walks again. I should mention here just how saintly Cousin Helen is: she gives up the love of her life when she is first injured, despite his willingness to stay with her. Her former betrothed then goes on to marry another woman. They name their daughter Helen.
I also read Eleanor H. Porter’s Pollyanna, in which young Pollyana, a freshly orphaned yet optimistic little girl, comes to live with her bad-tempered Aunt Polly. After a series of cheerful adventures, Pollyana gets injured, and – you guessed it – is bedridden and unable to walk. She loses her cheerful outlook, and slowly gains it back. The end of the book shows her – you guessed it – beginning to walk again.
Where does this leave those of us who can’t walk again, then?
In fiction, the Katys and Pollyannas of the world recover from their disabilities. Their time spent as invalids teaches them valuable lessons: patience for Katy and hopefulness for Pollyanna. Having learnt these lessons, they begin to walk again and their disability becomes an anecdote of the past. There are sequels to both novels, by the way. Neither mention Katy or Pollyanna’s past disabilities in detail.
This is not how my illness works.
I was diagnosed with Type 1 diabetes at the age of seven. I spent Diwali in the hospital, and the next month at home getting used to my new life. That is the best way I have of describing it: not a life that is significantly better or worse, but a life that is new. A life that revolves around checking blood sugar, injections (I counted recently: over 17,000 injections so far), and tiredness. They warn you about blood sugar fluctuations, injections, and the dietary restrictions, but they do not warn you about the tiredness.
Also read: How I Became ‘The Sick Girl’
Having diabetes means I need to constantly regulate my body. There are a thousand things happening inside my body and I have to keep track of all of it. Everything could be a symptom. I watch out for every headache, every sudden bout of weariness, every bit of nausea. I am on high alert, all the time. This sort of mental strain is not something I can explain easily without seeming overly dramatic or like I am exaggerating. It brings with it its own mental fatigue and stress.
Of course, you wouldn’t see any of this if you looked at me. I have what is called an invisible illness. If you looked at me, in my 23-year-old glory, I would not look ill. The effects of my illness are also largely invisible. Unless you look very closely, you cannot see the scars of injections on my thighs and abdomen. You cannot see the sugar in my blood. You cannot see the ache in my feet or the sudden dizziness that wakes me up at 3 am for a hypoglycaemic reaction or the burn in my throat during especially high sugar.
And because you can’t see it, you don’t know how serious it is. And I don’t blame you for it! Most people who aren’t diabetic or do not know diabetics have no idea what it is. They think of diabetes and recall a tacky outdated joke about something being so sweet that it induces diabetes and consider the joke a pinnacle of humour.
Here’s what it is: the pancreas produces insulin, which regulates your blood sugar and breaks down sugars that are in the things you eat. My pancreas do not produce insulin. As a result of this, I take insulin injections to break down the food I eat, and I monitor my blood sugar levels constantly. I inject myself daily. I am at risk for several things. Diabetic neuropathy. Eye complications. Now, with the coronavirus pandemic, I am considered high-risk. I recover slower from injuries and illnesses, so something that might take an able-bodied person a week to recover could take me two.
I have been hospitalised for diabetic ketoacidosis before, where my blood sugar gets high enough that I am dehydrated and sick and need medical intervention. I have hypoglycaemia sometimes, where my blood sugar drops low enough (below 70 mg/dl) that I am at risk for fainting or passing out unless I get some sugar in my system immediately. I have fainted on several occasions. My biggest fear is being hypoglycaemic in my sleep and not waking up in time.
I’m sure you have questions: Is it really that difficult to regulate your blood sugar and avoid these complications? (Sometimes, yes. Most of the time, no. But I’m a work in progress, and my illness is just as stubborn as I am.)
Is it really that bad? (Sometimes, yes.)
If it’s as bad as you say, surely every diabetic would be much more stressed out and upset all the time? (Short answer: Yes, we are. But also, diabetes is different from person to person – and there is more than one type. Diabetics also have an increased risk of depression.)
If this was a dramatic essay, I would tell you that all of this is in the past and I am happy and healthy now. But life is more nuanced than that. I carry my diabetes with me every day, and I will for the rest of my life – or until there is some sort of miraculous cure. And yet I am happy, and relatively healthy within my unique immunocompromised parameters of health. Would I be happier or healthier without diabetes? It’s impossible to say.
My diabetes is a part of me, a complex, annoying neighbour I have to live with forever. Any triumphs in my life will happen alongside me managing my diabetes. I recently graduated from university with a first class honours and yet, wonder of wonders, I was sick the whole time. I was hypoglycaemic two days after my graduation day. I’m always going to be a little sick all my life, no matter what else is going on.
World Diabetes Day is on November 14. I will be just as sick on World Diabetes Day as I always am; not better or worse than my able-bodied friends and family, just different. I might be tired. I might be sicker than usual. I may have a healthy day. I have no way of knowing. Last year, on World Diabetes Day, I wanted to order myself a little cake to celebrate. It also happened to coincide with my 15-year anniversary of being a diabetic, so I felt a celebration was called for. But my blood sugar was too high, so I had to cancel that plan at the last minute. How’s that for dramatic irony?
This is not a dramatic essay, so I can tell you with confidence that it will not be the end of the world for me. Life has a way of going on for many of us with invisible illnesses. It is complicated, and messy, and we waste approximately 50% of our time explaining what’s happening in our body to people who don’t get it, but it will go on.
But for God’s sake, the next time someone tells you they’re sick, don’t ask for intrusive details. Don’t doubt them. Don’t expect them to recover instantly and become your idea of a normal person. Don’t ask them how they’re sick when they look so healthy. Take a breath, show some empathy, and believe them. The world just might get better for it.
Shloka Ramachandran is a poet and an English and Creative Writing graduate of the University of London, currently based in Mumbai.