Maya Bailey conveys her life-saving relationship to the data that her phone stores alongside the communities that it brings her closer to.
Technology. You can love it. You can hate it. But you cannot avoid it. Well, I can’t.
As a self-confessed social media lingerer (I still log onto the Tumblr account I made in 2012 aka the Golden Era), I am now examining my own personal relationship with technology as someone who suffers from a multitude of chronic illnesses. In a world where more people are finding solace in niche online communities and doctors appointments are now rarely done in person, I want to show you all a side of technology that 15 million people know all too well…
I have Type 1 Diabetes, a chronic illness that means that my pancreas has completely stopped working. My body at the tender age of 11 thought that the insulin my pancreas was making was essentially a threat to my body (it was not) and decided to kill it off. Not a particularly smart move from my body, but I digress. This ultimately resulted in me having to take on the role of manually regulating my insulin levels – a lot of pressure for an 11 year old I must admit. This entailed monitoring my blood glucose, as well as calculating every carbohydrate portion, both of these need to be controlled by varying doses of insulin which I used to have to administer via injection.
I am now a proud owner of an insulin pump, a device that is essentially an external pancreas. I no longer have to calculate insulin doses or figure out what carbohydrate ratio I am on. All I need to do is type in my blood glucose result and the amount of carbohydrates I will eat and it figures it all out for me. As well as having a pump, I have been a blood glucose sensor wearer since 2019. It’s a small circular device that lives on my upper arm, continuously reading my blood sugar levels throughout the day. All I have to do is wave my phone in front of the sensor and a reading appears onscreen. Getting these two revolutionary medical devices has been an uphill battle, but I do feel blessed to finally have them in my perfectly manicured hands.
Now, I could go on about how there is a gap in the market for luxury/custom made pieces for diabetics who wear sensors/pumps that help them essentially dissolve into the background, but I feel that’s a task for another essay. What I will say is that the purpose of these devices is not to stand out any more than they need to. Sure, people have seen them and asked if I was a secret agent, but they are a lot less conspicuous than having to lift up my top and stick a needle in my belly on the tube or having to do a casual blood sacrifice (also known as finger-prick blood glucose test) at the dinner table. In a world where we are being told conflicting messages to stand out but also to fit in, I feel like it’s every chronically ill person’s prerogative to be able to choose when and how they exist in society. I experience the world differently, and yes sometimes I feel like flaunting my newly purchased pink medical bag from Esty on Instagram stories. But sometimes I just want to sneakily check my blood sugars without the world and their mothers asking 101 questions about my glucose results.
Most of my doctors appointments are now done via phone, in what has become a carefully coordinated dance between me, my medical software and the internet. A long process of having to make sure that the data has been downloaded off my pump (or my blood glucose monitor), transferred onto the software, then converted into graphs. Only after all this has been done can the information finally be emailed across to the relevant medical professionals. It is all a bit of a faff if you ask me. At best, all this takes 1 hour, at worst it can take 8 hours plus a weepy Maya at the end of it. But honestly it’s a dance worth doing.
Now not to be hyperbolic about this, but I have almost died without my phone. This sounds drastic, and I can hear you all cry “GIVE US MORE CONTEXT ON THIS BESTIE!!!” If there is one thing I love, it is a story time, so buckle up *clears throat*.
I was out with my friends having a couple of glasses of wine, cackling and crying at the current state of the world when things took a turn for the worse. I started to throw up aggressively (which is something I NEVER do when drinking). In a moment of respite, I yelled for one of my friends to get my phone, because some innate part of me knew that this all needed to be documented. I needed my phone so I could record my blood glucose levels via the sensor, as it was the easiest way to determine if I needed my friends to call me an ambulance. My sensor showed that although my blood sugars were within a normal range, they were falling at a rapid rate, a feature exclusive to the sensors. An ambulance was called immediately. Now here is where things get a bit hazy as I began to have seizures on the way to A&E. The next thing I knew I was surrounded by medics in a brightly lit room. To say I was a little confused is an understatement. Once I gained my bearings, I again asked for my phone. I needed to contact two very important people; my mum and my best friend Kath. Kath had access to a shared Google document which has a full run-through of all my previous hospital admissions, current medication and formal diagnoses. I needed her to send an updated version to my phone so I had it to hand to show the doctors. I have found that some medical professionals have no interest in looking through medical histories, choosing to ask incessant questions instead.
True to doctor protocol, the usual questions of “When did the symptoms start?” and “What were you doing beforehand?” began to flow. I usually struggle with these questions in an emergency because once again, my brain is not at optimal functionality. However, because I had been monitoring my blood sugars on my phone throughout the evening and was changing my insulin ratios, I was able to give the doctor the exact timings and measurements. I was able to recall when I lowered my insulin dose because it would be on my pump history. I could show them when my blood sugars started to take a turn because I had the data on my sensor app. All this information created a clearer picture of the night than what I could remember at the time.
I won’t bore you with the further details of that night in hospital. What I will say is that once my phone battery died it turned out to be a Comedy of Errors, but instead of laughing I was being failed at every step of my care by the people whose job it is to protect us at our most vulnerable. A Tragedy of Errors if you will. I was left to feel like the only things I could trust were my own common sense and my phone. All those qualified professionals could not compete with the knowledge I had stored in my (at the time compromised) brain and iCloud. Moments like that taught me the magic of technology and also, to always carry a phone charger.
Honestly before I had all this snazzy tech, I used to be a recurring character in A&E. I am not saying that my devices have completely eliminated the need for A&E admission, but they have dramatically decreased my visits. For the most part, I am now living my best chaotic life on various social media sites. My use of technology is not restricted to the functional physical side of my health. It is also very much attached to my emotional and mental health.
My Instagram is sprinkled with thirst traps where I unashamedly show off my medical equipment. My Twitter is filled with retweets from various chronically ill activists sharing experiences such as how weirdly all GP receptionists have very passive-aggressive vibes. I have found online communities that regularly talk about the issues I once thought only I suffered with. From meme pages to shouting into the social media void about an oddly specific chronic illness dilemma, it takes only one like or a follow to connect with people you may never meet, but who fully understand you. Nothing fills my heart with more joy than getting sent a meme at 2 AM with a notification heading saying “Isn’t this sooooo us!!”
Up until this point, I had never really thought about what the future of health tech would look like. I mean, if you would have told teenage me that not only has adult Maya managed to find people she can relate to on a physical, emotional and mental level, but they also look like her, she would not have believed you. Let alone believed that she would never again have to cry herself to sleep because her fingers were sore from all the finger prick tests she had to do, or that she would never have to scurry away to the toilet every time she needed to do an injection. The amount of freedom I have now could not have even been imagined by those at the forefront of health tech, let alone a girl from South West London whose only real life goal was to have a day where her blood sugars were not off the charts. I say all of this because even though I am quite literally living the hybrid cyborg chronic illness dream, my imagination can not comprehend what the future will hold.
Will medical tech eventually get to the point of a man-made functioning internal pancreas, built specifically for each diabetic patient, where the internal system would be connected to an app on a phone? I can only dream. I know young me would not be able to fathom the world I live in now. Who’s to say I won’t feel the same in another 15 years? As medical advances are being made every day, I feel like we are approaching a world where life can be made just a bit easier for those of us who are usually forgotten by mainstream society.