The quiet, unglamorous labour of living with Type 1 Diabetes
Siddharth Kankaria's lived experience, resources and storytelling advice on T1D; plus, media recommendations
Hiya Folx,
It’s November and it’s raining events! Among others, I’m attending the Splice Beta Media Festival in Chiang Mai on the 26th and 27th of November. I’d love to have coffee or just go gallivanting around the charming streets of the city if you’re around!
[Logo ID: On a bright purple background, two white hand illustrations form an open rectangular frame. Inside the frame, the words ‘Reframing Disability’ are written in white text, symbolising a fresh perspective on disability.]
A few weeks ago, I was waiting for Siddharth Kankaria at Communiti – a vibrant restaurant we both love in Bengaluru. We were meeting for an early lunch, but Siddharth – who I was meeting for the first time – was stuck in the traffic so I decided to while away time with some orange juice.
“Would you like to have juice?” I texted him.
“Sorry, I can’t, it’s too sweet for me,” he replied.
“Without sugar?”
“It still has a lot of sugars like fructose.”
“He is really careful about his diet,” I thought, feeling a twinge of guilt for ordering juice; though it didn’t stop me from relishing every sip!
My perception changed when I learned that Siddharth isn’t just health-conscious. He has to be careful about his diet, every minute of day, because he has lived with Type 1 Diabetes for twenty years.
This World Diabetes Day (WDD) – the world’s largest diabetes awareness campaign held annually on 14th November – I asked Siddharth to write about his personal experience with T1D (and fibromyalgia) and the misconceptions and misrepresentation of the conditions in the media.
Before you dive into his essay, here’s a little backstory. Siddharth and I first crossed paths as independent consultants. That shared path led to lively conversations, often circling back to a theme we both care deeply about: inclusion.
Siddharth consults at the intersections of science, society, and justice. Based in Kolkata and Bengaluru, he spends his time contributing to mentorship, capacity-building and social justice efforts and developing intersectional science engagement practices for the Global South. He is also an avid enthusiast of theatre, art, culture, reading and all things gastronomical. Connect with him via his website or on social media at @SiddhrthKnkaria.
ID: Siddharth, a young Indian man with black hair and stubble is dressed in a red jacket and layers of clothing within. He is wearing glasses with a round pale white frame and standing against a bridge on the Oudezijds Achterburgwal Canal in Amsterdam, laughing into the camera.
Sadly, India is called the diabetes capital of the world. Last year, a report by the NCD Risk Factor Collaboration (NCD-RisC) and the World Health Organisation (WHO) estimated 212 million people living with diabetes in India, accounting for over a quarter of the world’s 828 million cases. Data from the International Diabetes Federation (IDF) Diabetes Atlas 2021 shows that India has the world’s highest number of children and adolescents with T1D.
What 20 years of living with Type 1 Diabetes and one year with fibromyalgia have taught me
by Siddharth Kankaria
I was twelve when I first heard the words chronic, autoimmune, and insulin. They were served to me in a hospital room as a platter of harsh realities as I woke up from a three-day slumber in the ICU. That’s the day T1D entered my life. Twenty years later, it’s still here: the never-ending rollercoasters of blood sugar highs and lows, the mental arithmetic of counting my carbohydrates before every meal, the midnight bouts of eating to treat my low blood sugars, the meticulous planning every time I step out of the house, and the soft scars from injecting my body four times a day that no one ever notices.
T1D is an autoimmune condition where the body’s immune system attacks its insulin-producing pancreatic cells, mistaking them for foreign intruders. As a result, people with T1D don’t produce any insulin — an essential hormone for regulating blood glucose levels.
Type 2 diabetes (T2D), on the other hand, is primarily a metabolic disorder where the body produces insulin, but often in insufficient quantities or is unable to use it effectively. T2D comprises about 90-95% of all diabetes cases worldwide, and is often (though not always) associated with obesity, diet, lack of exercise, age, and other lifestyle factors.
While T2D can often be managed by addressing these lifestyle factors, T1D cannot. They are essentially different conditions that have some symptoms (and a name) in common, but different treatment approaches. The first and only course of treatment for T1D is insulin — not as a “last resort”, but from day one of the diagnosis.
Misunderstandings galore
Living with T1D in India often means being on the receiving end of unsolicited advice and casual misinformation all the time.
“You must have eaten too much sugar as a kid.”
“If you’re on insulin, things must be really bad.”
“So how much is your blood sugar this month?” (As though it doesn’t change every five minutes.)
“Don’t eat rice or mangoes!”
“Just do yoga, eat methi (fenugreek) seeds, drink karela (bitter gourd) juice and you’ll be cured.”
People mean well. That’s the tricky part about benevolent ableism: harmful prejudices ‘sugar-coated’ with good intentions. But kindness without understanding still hurts. Every ignorant comment reinforces the idea that diabetes is a moral failing — something caused by laziness, overeating, or a lack of self-control — rather than what it actually is: a complex physiological condition that demands constant physical and emotional labour.
Once, on a train, as I was injecting insulin, a co-passenger frantically asked, “Are you taking drugs?” Well, technically yes — insulin is a drug. But no, not that kind. I really wanted to say, “Sure, do you want some?” Instead I calmly did the hard work of explaining. That encounter stuck with me, not just for its absurdity but for what it revealed: how quickly people judge what they don’t understand, and how the onus of educating people always falls on those already marginalised.
How media frames us
Nearly all media coverage, public conversations, and dinner-table chatter about diabetes focus on T2D, leaving little room for awareness on what living with T1D actually looks like: children diagnosed at two, six, or twelve; teenagers learning to inject themselves; and adults counting carbohydrates with the precision of accountants.
There are other lesser-known forms of diabetes too — gestational diabetes, MODY, Type 1.5, Type 3c, and others — but they’re talked about even more rarely. The result is profound invisibilisation: a condition that’s misunderstood by almost everyone except those who live with it.
This erasure is further exacerbated by the fact that T1D is not even recognised as a disability by Indian law, unless accompanied by more secondary complications like vision impairment (due to retinopathy), kidney failure, or limb amputation (due to neuropathy). However, several countries like the UK, USA, and Canada formally recognise T1D as a disability (irrespective of secondary complications), and offer not only accommodations and benefits, but also legal protection against discrimination. In 2018, the Central Board of Secondary Education (CBSE), India, categorised T1D as a disability and allowed students with T1D taking the board exams to carry food and water to the examination halls. Although a step in the right direction, it still feels far too little and late.
Media portrayal (and public perception) of diabetes often swings between two clichés: we’re either tragic figures to be pitied or heroic warriors “overcoming” their disability through sheer willpower and kale smoothies. But both erase the harsh reality of living with this condition and the quiet, unglamorous work it entails.
Even when the media does depict diabetes seriously, it’s almost always Type 2, and almost always framed in the language of morality and control — whether it’s about controlling your diet, your weight, or your numbers. Rarely does it recognise that the idea of control itself can serve as a burden, or how even the most disciplined days can be easily undone by stress, hormones, sickness or just the weather.
Representation of disabilities should serve to humanise us, not just inspire. Going forward, I would love to see and hear stories that depict disabled people not as heroes, victims or metaphors, but as ordinary humans living messy, monotonous, but equally meaningful lives.
Overcoming the stigma within
While there’s change to demand outside, there’s as much unlearning to do within too. For most of these twenty years of living with T1D, I rarely spoke about my condition openly. I prided myself on never letting diabetes slow me down, never asking for help, and never admitting to a disability. I carried on — quietly, constantly, and often at great cost to myself. I performed wellness and pretended to be able-bodied.
Then, last year, came another diagnosis: fibromyalgia, another autoimmune condition that manifests as chronic pain and fatigue that can be equally triggered by an infection, a stressful day or eating the wrong kind of food. It’s a condition that shapeshifts daily — fluctuating in intensity and pain — graciously giving me a few good days a month, but returning, equally unpredictably and painfully.
This combination of erratic fibromyalgic pain and relentlessly exhausting diabetes management led to a spiral of exhaustion and negative reinforcements. Suddenly my body wasn’t just chemically deficient anymore; it became unreliable. Any semblance of a work-life balance got thrown out of the window as my life got shrouded in muscle pain, brain fog, sleeplessness, anxiety, and blood sugars spinning out of control. And I could no longer pretend to be fine.
After juggling more than 20 specialist doctor appointments and a spate of diagnostic tests — all of which were inconclusive — I finally realised that the way out has to be within. For the first time, I began listening to my body, instead of fighting it.
Redefining disability
For years I flinched from using the word disabled — as though using it would mean admitting to being weaker or less capable. But this past year brought a lot of truths into sharp focus for me. I stopped seeing my needs as inconveniences or my conditions as weaknesses. I began acknowledging the daily, invisible labour of living with T1D and fibromyalgia — the data-tracking, the constant hypervigilance, the physical and emotional rollercoasters, and quiet accumulated burnout.
I realised that asking for help is not surrender, but an act of strength. And most importantly, I embraced calling myself ‘disabled’ while describing my conditions — not in a limiting sense, but in a liberating one!
A turning point in this journey of acceptance was learning about the difference between small-d disabled — someone with a physical, mental, or sensory condition or impairment — and capital-D Disabled — a social and political identity that acknowledges that disability access issues stem not from our bodies, but from a world designed for ableist realities.
Owning and accepting my disability has been freeing in more ways than I imagined.
What this has taught me
After twenty years, I’m finally learning to let diabetes explicitly occupy space in my story — not as a disclaimer, but as a declaration. It has shaped me in ways I can’t untangle: making me softer with other people’s pain, sharper about injustice, and more intentional with my radical empathy.
It’s also taught me to honour the invisible labour of survival. To see the daily data-tracking, silent endurance, and emotional swings as hard work — unrecognised, unpaid, but essential.
Of course, there’s still grief to grapple with — for all the freedom I don’t have, for all the days I just want to take a break but can’t, and for the simplicity of a body that once worked without thought. But there’s joy too: in living your life unapologetically, in being able to endure and succeed despite the odds stacked against you, and most importantly, in having an incredible community of T1Ds, friends and family around me who speak this language of numbers and nerves too.
Yes, I am D/disabled. But I no longer aim to “overcome” or “fix” my disability. I only aim to live with it — fully, imperfectly, truthfully — and with a candy-truck’s worth of kindness, empathy and love for myself!
Post Script: Learning to work, live and thrive
I’m still figuring out how to live and work well with my body’s unpredictable rhythms. Some days, I can work for hours; other days, every task can be interjected by blood sugar crashes or intense joint pain. Learning to manage energy, instead of time, has been the biggest shift in terms of adapting to my body’s needs. I try to pace my work around my body’s cues, build buffers into deadlines, and keep tasks modular so I can pause or adapt without guilt.
Learning to extend myself the same compassion I offer to others has been an important lesson. As has setting clear boundaries with the people I work with and being upfront about my limits. Technology helps in many ways too: insulin pumps, glucose monitors, and digital planners can now do a lot of the heavy lifting when my brain can’t. All of these aren’t just indulgences; they are what make sustainable working (and living) possible for me.
To sum it up, I’ve stopped treating health as a side project, and started seeing it as the critical infrastructure that holds everything together. Living with chronic illness is an act of continuous editing: of expectations, of ambitions, and the very idea of what a “good” day looks like. I don’t have it all figured out yet, but I’m learning that thriving isn’t about overcoming my disability. It’s about working with, not against, my body.
Media Recommendations
Listen and Follow
Siddharth enjoys listening to the Juicebox Podcast and follows the Blue Circle Diabetes Foundation, Diabesties Foundation, diabe_tech and type1amy for information on T1D.
Read
I like everything Andrew Leland writes. In his piece Manual Labor for The Baffler, he writes about how a new generation of deaf writers reimagines language, text and sound. By tracing the evolution of deaf culture, activism, and representation, from the birth of ASL to today’s debates around cochlear implants, the essay examines how language itself becomes a site of both exclusion and empowerment for deaf individuals navigating between worlds. Among other things, I loved how Andrew explores how deaf writer Rachel Kolb’s memoir, Articulate, challenges ideas of authenticity, language, and identity through her shifting use of speech and sign.
Watch
Founder of Radio Udaan Danish Mahajan speaks to a lawyer and activist Shashank Pandey about the inclusion of disabilty in India’s upcoming census. Listen in if you understand HIndi.
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Warmly,
Priti
Very educative...