What access to a smartphone has meant for me as a person living with chronic fatigue syndrome

For those of us who have access to them, smartphones can in many ways build a bridge between a world which isn’t designed for us and a world that we can actually navigate.

‘I can’t feel my legs.’

I screamed in my head, but my throat closed up in panic. I was stuck.

It was about 1 am and I had just, rather unceremoniously, sat down on the toilet to pee. Only this time, for the first time in the 22 years of my life, I couldn’t get back up.

The incident was the first of its kind, but the ordeal was old and familiar. I had grown used to a frighteningly high level of muscle fatigue but I had never considered being stuck in a situation like this, quite literally with my pants down.

In my struggle to get back up, I fell over, and everything stopped.

In the dead of the night, with tears streaming down my face, I was numb on the damp bathroom floor. I couldn’t help feeling my helpless, humiliated worst. Thankfully, I had my cell phone on me. I called up my brother repeatedly and he came and broke the door down.

I was safe.

Then there was the time I was travelling alone last year and had a full panic attack as I entered the airport because I was fatigued to my maximum. As the airline ground staff helped me process my ticket and luggage, it felt as if everyone’s eyes in that tiny Pune terminal were fixated on the young girl in the wheelchair. Confused, pitying stares.

But while all the drama unfolded outside, I was catching up on what my friends were doing on their Instagram stories.

My first memory of illness goes back about six years when, while squeezing half a lemon, it felt as if someone was squeezing all the strength out of me, and I felt my fingers go numb. My body has since gone through cycles of waning motor strength and rotations of misdiagnoses to finally land at the deduction that I have chronic fatigue syndrome. Also there is anxiety, lots of it, and that only makes it worse.

In these last six years, I somehow finished high school and college, slipping, sliding and stumbling with changes neither I nor my body could understand. I went from school pro-athlete, debating champion, head girl, to the girl who cried loudly and alone after all her friends moved to bigger cities and better jobs while all prospects of the future in journalism she’d imagined for herself seemed to close for her.

Although countless narratives explore how smartphone technology has affected human interaction, I feel that we don’t think enough about how they help those of us who live with disabilities and debilitating chronic illnesses. While my 20th century parents have always communicated their displeasure about the volume of my smartphone usage, I believe that the little device might have been saving my life every day, in ways other people can’t fathom.

Many people who live with disabilities will tell you that our disability is not as big an obstacle for us as is having to navigate an ableist world. Having bad eyesight doesn’t feel like a dead end because glasses are easily available and universally accepted. The same, though, can rarely be said about buildings that don’t have ramps or escalators, or day schools that have no provision for supporting children with disabilities.

And for those of us who have access to them, smartphones can in many ways build a bridge between a world which isn’t designed for us and a world that we can actually navigate.

In the last few years for me, having a phone didn’t just translate into having an emergency contact. It also meant I could take control of situations which are otherwise not designed to cater to someone with a motor disability. By calling cabs, I could commute independently. I could order food and groceries when I did not have the strength to make something to eat. I could make new friends, stay connected to old ones and even find romantic companionship through apps that didn’t need me to leave my bed.

Against a yellow background, an illustration of a person looking down, with a calm expression, at a cat on their lap. The cat looks back up at them.

Credit: Caroline via Flickr, CC BY 2.0.

The smartphone, especially in a country like india, is rarely everybody technology’ and how much it has helped me, and in what ways, has been a direct function of my privilege. Only about 31% of the country has access to the internet on their phones, of which only 3 out of every 10 users are women. We have barely enough information to say how many marginalised people or people with disabilities this portable technology has been able to reach. Also, even though more people have access to smartphones than they did five years ago, it cannot cater to every range of ability.

These are important issues of access that we need to keep in mind even as we discuss how the smartphone has helped some of us navigate difficult obstacles.

In my own life, having a smartphone has meant the difference between being able to work and not being able to work.

With time, I realised that having chronic fatigue means a lot of waiting. Waiting for a diagnosis, waiting on people to accompany you to places, waiting on some sort of cure — just a whole lot of waiting. Last year, I cooked up different versions of the same story when people asked me what my ‘plan’ was after I graduated college. Beyond any flavour I added, the common denominator was always the same; I was going back to live with my parents and I was waiting for them to pick me up. I was too sick and too tired for an office job which, in its own insidious way, threatened to strip more away from my self-esteem.

Then, I got my first assignment thanks to my phone. A tweet by a small but promising independent feminist organisation looking for people to write for their blog found its way to my timeline. And soon, in the three feet of distance between my bed and my desk, I found more assignments and editors through social media or writers’ forums. Today, I write freelance and can hunt editors down and send pitches, all while being bedridden. I make enough money a month that I don’t have to wait for anyone anymore.

I rarely write about illness though; it’s exhausting, unnerving and painful in the way it forces me to look at how big a grasp it has on my everyday life. But the more I reconnect with my own self, find purpose through my writing or activism online, or even the DMs and emails from friends or new Tinder matches, the dissonance decreases, somewhat. Last year around this time I was a ball of anxiety curled up in my bed, cursing my body for becoming beholden to symptoms I couldn’t control. Those days still come sometimes, if not often, only now perhaps my idea of control has shifted.

It’s not the same as my best friend’s hug — the most warmth I get from this device is when it heats up on summer afternoons. Laughing on a phone call is not the same as laughing with friends to a slap-on-the-back-and-leave-everyone-in-splits joke. But it is something, for now.

Disease, when it came, put me in an uncomfortable grey area where everything was put on hold. It was a smartphone that gave me the certainty that I was still present in the world of the living. A device notorious for complicating human lives uncomplicated my sickness for me and where canes, wheelchairs and the strong shoulder of a helpful friend might have helped me walk, somehow this small black device was the one that actually helped me move.

Featured image credit: Alia Sinha