The Little White Disc That Sits on My Arm
- 1. Doctoral Programme in Clinical Psychology, School of Health Medicine and Life Sciences, College Lane Campus University of Hertfordshire, UK
DEAR EDITOR
This ‘collective letter,’ constructed from letters written by people living with type 1 diabetes mellitus, has been produced as a resource for the pedagogic toolbox of diabetes healthcare professionals, including those developing diabetes self-management technology. The use of solicited letter writing has long been endorsed as a valuable therapeutic process, but only recently has it been considered as a method of collecting qualitative data [1]. Sixteen participants, all of whom identified with having disordered eating patterns/behaviours, produced letters for a doctoral research project [2], after being instructed to write a letter to their blood glucose monitor. The collective letter produced below, written using amalgamated participant quotations, allows clinicians to connect with patients’ lived experiences of diabetes, providing an authentic account of how people live with, and relate to, their blood glucose monitor. We ask that clinicians read and hold in mind this letter, considering how it may prompt or inform discussions regarding diabetes self-management and the challenges and opportunities afforded by new technology and other advances in treatment. The value of this collective letter lies in the centring of patient experience and the implementation of collaborative consultations when supporting self-management and considering the impact of diabetes on patient wellbeing.
To the little white disc that sits on my arm, Thank you. Thank you for literally changing my life in so many ways. You’ve saved it more than once. Whether it be a miscalculation of insulin or that extra walk, you alarm, your colour changes, shouting at me telling me I am low thank you again for that. We’ve been working together for a while. Thrust together! I’ve been very attached to you and the continuous supply of new information you have brought me during this arranged marriage. After years of finger pricking and frustration at the incomplete picture of data I could get from what felt like–in such a technologically advanced world–a painfully archaic way to manage the full-time job that is type 1 diabetes, I hoped for a drastic turn around in how I felt towards diabetes. That may have been naïve but the thought of not having to assault my fingers to draw blood for the purpose of gathering information was a big benefit. You felt like a game changer and I wanted to try hard to prove that I was worthy of such technology and that I could get better control. About a year after the switch to you, I was wrestling with how to weigh up the benefits and negatives. Finger prick checks were a ‘hassle,’ a major inconvenience, and probably the reason I didn’t check my blood glucose in the early days. Not checking meant I lived on how I “felt” and I would guestimate my insulin doses. Before you, the weight of diabetes felt absolutely crushing. Exhaustion, burnout, resentment of those close to me, and disdain for the scars, pain and black dots on my fingertips that resemble aggressively used pin cushions meant my desire for you had been growing for a while. Although the benefits were self-evident, the idea of introducing new tech didn’t sit well with me. I had been wrestling with diabetes for so long, and the mental health ramifications associated with it, I felt that bringing a new character into my diabetes story would upset the equilibrium I was clinging onto. Another aspect is that the old fashioned finger prick made it easier to ignore my diabetes. I would only be faced with the potential bad news of an unhealthy blood sugar reading if I chose to do the test. With you, I have nowhere to hide. I have to reckon with my sugar levels on a far more regular basis. I’m sure many others welcome you and this technology with open arms-the alleviation of a burden, fantastic! But those like me who had/have a contentious relationship with their diabetes, you can feel, at times, like an added weight that pulls me down. There is so much data! Knowing I need to take my health more seriously, scanning you became a very important part of my life. With increased checks, I noticed that my ‘feel’ for my sugar level became worse and I needed to check more often. Soon, I was scanning like my life depended on it fixated on being ‘good,’ staying in the ‘green’ and reaching the 100% time in target range, all presented on a beautiful graph. Struggling to be a “better” diabetic, my life revolved around scanning you. You allowed me to check more and more, in public and on the move. My diabetes control became very good-better blood sugars, more time in range, and a significant drop in HbA1c. However, there is a downside–to be this ‘good’ at managing sugar levels you have to pay a heavy mental price and I wasn’t very flexible or kind to myself. I can see that I set myself unreachable targets, becoming overfocused on staying in range. I felt alone and scared. All the time I watch, scan, and monitor, hoping to justify some chocolate/cake or, if I don’t need to eat, that my range stays in the green zone-stable. Fluctuations above inspire fear and the need to minimise the risk of long-term complication, fluctuations below are joyful knowing I can eat without requiring more insulin.
Test, test, test. What am I now? Test, test, test. What am I now?
Once the novelty of you wore off though, and as my mental health plummeted, I started to resent you. I resented the intersection between man and machine, almost as much as I resented having diabetes and relying on injections to stay alive. My biggest resentment was the hypers–any and every reading above 10mmols felt like criticism. With their seemingly insatiable demand for more insulin, I associate the yellow-zone-double-figures as weight gain, overeating, or greed. I feel like a failure: frustrated, disappointed for allowing myself to eat, and fed up with the hold this has on me. I quickly realised that I didn’t care about time in range... all I cared about was keeping a flat line in the green zone. The green zone is optimal-the safe zone. It tells me to keep doing what I am doing, which often means not eating even if I’m hungry, avoiding moving, avoiding doing things I love, purely to try and keep the ‘perfect numbers’. Instead of continually having to eat certain things at certain times, it became easier to not eat at all and, as long as I was in the green zone (or close), I didn’t care about longer-term issues. Over time, diabetes has become mixed up with feelings towards my self-worth, my body, and my relationship with food and exercise. I have tried to surround myself with self-love and body positivity but messages of self-love sour under the ever-present shadow of diabetes. I remember reading something about how, when you don’t like how your body looks, you should focus on what your body does, what it can achieve, how it keeps you alive every single day…That’s a lovely sentiment but all I think about is how my body couldn’t even do what it’s supposed to. Broken, defective, diseased. My body doesn’t keep me healthy–in fact, it did the exact opposite and attacked itself to make me unhealthy.
Throughout darker days, having you on my arm has been a comfort and sometimes a thorn in my side-literally! I can’t deny how much you have improved my life–I feel it so strongly when you stop working or I get a dreaded scanning error (always when I’m furthest from home or on my last sensor - it’s nice that you have a sense of humour!) and I’m plunged back into the stone-age world of finger pricking. Even if it’s just for a few days, I am always so grateful when I have you back on my arm. You have been taking much better care of me than I ever did, you bring me mental peace and reassurance. But the one thing you can’t solve is my endlessly complex, turbulent relationship with my body. When I want to not be aware of my body, my weight, my blood sugars, having you stuck to me means I’m constantly aware. I think I take you a bit for granted these days; I can’t actually believe how much the work you do is freeing up time for me to live a more ‘normal’ life, albeit in the most abnormal way by some of the most absurd methods. You show instant viewing over 24 hours, one week, one month. I don’t need an Excel Spreadsheet anymore! You have given me confidence to try new foods, to be active, and try new activities. I can now exercise without the worry of my levels crashing; tracking, monitoring, you even help the consumption of emergency sweet foods when required. You have drastically improved my understanding of how my body works with diabetes. For that, I am really grateful to you.
But call me old fashioned, having more of a reason to have my phone on me is a bit brain scrambling at times; I guess that’s the direction the world’s moving in these days. Wearing you means that diabetes is always there, on my arm, in my phone. You are the unwanted reminder, the thing keeping my invisible illness from being completely invisible. People are fascinated. You are the talking point that the normies need. At first, they would stop me in public to ask what the round thing on the back of my arm was. A sticker? A nicotine patch? An electronic tag? I quickly grew tired of explaining type 1 diabetes over and over again so, to this day, I keep you covered under long sleeves. I started putting you on my legs to make sure that no-one would ever spot the telltale sign of a diabetic in the wild, tied to technology. I’m sorry about that. I’m not ashamed of you. It’s just a lot of explaining to do sometimes. What’s funny though is that now I spot us everywhere! I feel lucky but also unlucky to be born and diagnosed with diabetes in the time of medical technologies like insulin pumps and CGMs. I feel like the ability to access your readings at all times, whilst helpful, can be anxiety inducing. You were supposed to make me feel safer and more in control, but instead, I can feel smothered. Having all this information at my fingertips means that, when my mental health is in a good place, I can really engage with trying to manage my diabetes. But when my mental health is worse, that same information becomes overwhelming, chaotic, and shameful. Living with type 1 diabetes is tough and sometimes we just need a minute to be free! I wonder what it would feel like to not have to think about diabetes. How many more hours would appear in the day? You absolutely help me maintain sugar level control, but mentally I pay a price for that control, overwhelmed with information. Although you help me out, I must admit, when I finally fall asleep and you start vibrating to alert me to a hypo, I hate you for a few short seconds. I’m sorry I tell you to f**k off sometimes at 3am. I don’t mean it; I should be more grateful.
Sometimes I wish I could just turn you off, have a holiday, even for a few hours. In fact, often my favourite time spent with you is when I’ve swapped arms and I’m waiting for you to be ready–I call this the golden hour; I can have a little treat and it technically won’t affect my blood sugars because I can’t see how they’re behaving! As a perfectionist, it is difficult to treat myself or make decisions that I know will impact my blood glucose, and to see it so graphically on a screen in front of me. I find it difficult to let go, and you don’t make it any easier. You feel very intrusive. It’s so deeply personal, and sometimes feels like an attack. These feelings are worse when I’m on my own, or should I say when it’s just me and you. Looking back, my mental health and quality of life really took a dip with you initially. I cried in all the appointments I went to with healthcare professionals and no one really seemed to understand why. Looking through my graphs with a stranger as they asked what exactly I had eaten two Tuesdays ago and if I had insulined felt weirdly invasive and shameful. You’re forcing me to reckon with the bits of my condition I want to keep hidden and out of sight. I’d get asked a lot, ‘why are you upset?’ and comments would be made about how ‘good’ my numbers were. I was so focused on the data, scanning over 20 times a day. But I am more than a number, I just didn’t have the words to explain it.
You dug into my arm last night whilst I tried to sleep and I thought, I have become pretty dependent on you, I NEED you, and I certainly wouldn’t want to stop using you, but you are not a cure and I still have some way to go in learning to accept that you won’t always show me what I want to see. That’s ok because I am human. I also have to live my life. I really like having you around. I hope you stay and keep doing what you’re doing. You really are a big help to me. I don’t want to get personal but, in the future, I would like it if you looked a bit sleeker. Looks are not everything but size does matter. I wouldn’t mind you being a little smaller, as an appendage on my arm you sometimes catch and come off. When I have to cover you with adhesive medical tape, the tape ends up looking tatty and worn and makes you look grubby. I wouldn’t mind either having you hang around in other locations, just to give my arms a break.
We’re not long into this relationship, and I guess in terms of a lifetime, it’s pretty short still. I like you; I like you A LOT-I think you are pretty awesome-but I don’t think I can ever love you. Perhaps let’s look at this as our toddler years–lots of whining and crying when we don’t get our own way. But, you and me are a good team. Hopefully you can lead me into a healthier mind space and allow me to live my life to the fullest. There is so much more I like about you than I don’t. But if you keep waking me up at 3am with hypo alerts, I may actually skim you in the sea.
