Reinventing Myself in Response to Chronic Illness

Read about some of my experiences living with type one diabetes and how I have come to view diabetes as something worthy of both my empathy and attention.

 I’m eight years old and I can’t move my tongue. It feels like the piece of coral my father brought back from Indonesia is wedged in my mouth. I scramble to the bathroom and put my mouth to the faucet, shoulders slouching as my tongue absorbs water and moves again. 

As a child, I could open my mouth and drink gallons of anything. My belly would slosh as I walked. My grandparents complained to my mother that I was too thin. Later, she would tell me ‘I am thin. Why shouldn’t you be thin?’ and together we would laugh. What she didn’t know is that I was in the early stages of ketoacidosis which is a life threatening condition caused by the body breaking down fat at lighting speed. I had early onset Type One Diabetes (T1D).

The Romans called it pissing disease because without insulin a person would pee themselves skeletal before dropping dead. 

At the time of my diagnoses in 1994, childhood diabetes was almost unheard of even though it had been rising sharply for decades. In the UK for example, in 1958 T1D had a prevalence rate of 0.6/1000 and by 1970 it was 1.3/1000.[1] Today that number is 20.45/1000.[2] T1D is different to the epidemic of Type Two which is often oversimplified to poor lifestyle choices. My immune system has turned on itself. It attacks the islet cells in my pancreas so that it cannot make insulin which is necessary for maintaining optimum blood glucose levels. 

Injectable insulin was the medical miracle of the twentieth century. Before and after images from the 1920s show emaciated dying patients transformed into plump, red cheeked children within a matter of months. The images are mythical. A testament to the power of science and human ingenuity. In his book Bitter Sweet, doctor Chris Feudtner writes that insulin provides a parable of salvation, a tale of diabetic deliverance, and yet this account ignores the more sober legacy of this so called miracle; “all the problems that remained, and the new problems created by the transmutation of diabetes into a chronic illness”.[3]

I’m twenty one years old and I am outside a bar handing out vouchers. The ocean is still, and the air smells of salt, perfume, and yesterday’s beer bottles. Gaggles of people laugh and stumble on the cobbled streets of Plymouth, England. 

            Someone comes up to me and I hold out a voucher.

            ‘Buy one get one free,’ I chime.

            ‘Lizzy?’ says the someone, and I look into eyes I haven’t seen since childhood. She’s still tall and slender with the same bobbed blonde hair, and slim face. 

            ‘Sam?,’ I say.

            Tears slide down her face, and before I can react, she laces her arms around me. I’m not sure what to think, but as my mind floods with memories, my body softens into her, my head drops against her ear. 

The hug draws attention. Drunk men sing at us and my colleague comes out of the bar. I look up at her, my chin on Sam’s shoulder, my hand on the nape of her neck as she shakes and weeps. My colleague takes the leaflets from me and as she draws close and my body moves, Sam steps away.  She wipes her mascara smudged cheeks and says, ‘I lost my baby.’ The music blares from across the street and all I can do is stutter. ‘I’m…’

We talk a little more, but the situation is not conducive to a deep heart to heart. 

‘Make sure you look after yourself,’ she says and she walks away.  

I never see her again, but when I am pregnant with Riley and later, Vienna, I think about Sam all the time.  

I knew Sam from diabetic children’s camps put on by the UK National Health Service. We learnt to rock climb, kayak, orienteer. The camps were meant to teach us that we were normal and could do anything, but it was at night in the dorms that a different type of learning took place. 

Sam was older than me by four years which when you are eleven makes all the difference. I was in awe of her trendy clothes, cute looks, and her full out rebellion against diabetes. She skipped insulin injections to lose weight and then she would double dose, making herself nearly pass out so that she could eat sweets and chocolates.  If Sam was 15 today, she might be diagnosed with diabulimia, an eating disorder associated with diabetes and restricting insulin doses.

 I experimented with this type of abuse as a teenager. It makes your hair fall out, skin crack, and you’re so weak you need to pull yourself up stairs. You also stink. My Dad would complain that I smelt like rotting strawberries and tell me to shower more often.  My dabbling in this, though toxic, was short lived, but that doesn’t mean it won’t bite me later. It is the accumulation of days with higher blood glucose levels that can lead to a plethora of issues later on. 

To quote Chris Feudtner again;

Diabetes today is the primary cause of new onset blindness in adults, accounts for a third of all cases of kidney failure, leads to half of all non traumatic limb amputations and overall stands as the seventh leading cause of death. Diabetics live with a substantial risk of heart attack, heart failure and stroke. Infants born to diabetic mothers are more likely to have congenital abnormalities and to die either in utero or shortly after birth …the cure of insulin has become the accomplice to a newly created disease of complications

I’m twenty-eight years old. I’m meant to go for a run around Dubai’s down town boulevard. The glittering lights fill me with joy and even though I’ve lived here for five years, I still can’t believe this is my life. I want to keep my amazing job and gorgeous apartment which means taking my diabetes very seriously.  

Today however, my blood glucose levels have been wild. I can’t go running.

I’m red faced and raging. I throw my blood tester across the room. I’ll never get diabetes right so why bother. I walk to Dubai Mall order a half dozen cupcakes from Magnolia Bakery and walk home. Six mountains of buttery sugar twirled and whipped like a ski field stare at me. I lick the top off the first one, loving it and hating myself all at the same time.  I eat another, feel sick at the whole situation, and I throw the rest down the rubbish shoot and scream in frustration. 

I hate diabetes and the constraints it puts on me. What that really means is I hate myself because diabetes and I cannot be separated.

So now as well as the physiological issues at hand, I add psychological ones. I spin in a spiral of sugary hatred and over sweet denial. 

I’m thirty-four years old, pregnant, and shopping for groceries with my two year old in Melbourne, Australia. My legs feel tingly. I need to eat some sweets or I might pass out. I rummage in my bag. Then my phone alarms because the continuous blood glucose monitor on my stomach that is connected to my phone via bluetooth has caught up with what I already know. 

It’s not a soft alarm. It sounds like I’ve stolen something and the police are on their way. 

Instead of looking for sweets, I’m searching for my phone, and then my body starts alarming too because just in case my phone is in another country, and I can’t hear it, the pump which is also attached to my stomach screams at me. I now feel like a walking fire engine, people are staring, and I still haven’t eaten anything. 

Apparently to be diabetic and not on an insulin pump is like driving a horse and wagon instead of a car. Perhaps I’m an old dog who can’t learn new tricks, but since attaching myself to all these wires my blood sugar is high, my mental health is fractured and I’m not coping, but when I tell my Diabetes Pump Educator that I want to come off it she says,

            ‘If you want what’s best for this baby, you’ll do as I say.’

            I zip my mouth, zone out, and repeat songs in my head as her lips move. Then when I get home, I have a mental breakdown. I see a psychologist and talking with her gives me the permission I need to rip the pump off and never see the Educator again. 

            According to Diabetes Australia, diabetics can make up to 180 more health related decisions a day than someone without the disease.[4]  It takes fifteen grams of sugar to raise my glucose from good to bad. That’s about seven cherries or half a banana or about five cubes of Whitaker’s chocolate. Blood glucose can run high because I take a hot shower, experience adrenalin, stress, monthly cycles, or even extreme weather. Despite knowing perfection is not bestowed on me as a mere mortal, and that all these variables outside my control exist, diabetes has many times, flooded me with guilt. 

The first time I needed laser eye surgery because I had developed diabetic retinopathy, I hated myself. I spent weeks running over every glass of wine, every bueno bar, every missed yoga class, every failure that lead me here even though “during the first two decades of disease nearly all patients with T1D have retinopathy”[5]. Diabetes was always going to get me in the end with or without my help. Recently, I was also diagnosed with diabetic mastopathy – benign breast lumps caused by diabetes. I know what I’d rather have between cancer and mastopathy. The diagnosis reminded me with flashing neon lights that despite now getting it right far more than I get it wrong, diabetes is still with me, it is me, or a big part of me at least. I am in relationship with diabetes and apart from my parents, it is the longest relationship I have had.

In the Conscious Parent, Shefali Tsabary asks parents to let the pillars of their old selves crumble. The impact of children “is indelible and we are required to reinvent ourselves in response”.[6] Reading this made me think of my experience with diabetes. 

I have been reinventing myself in response to diabetes since I was diagnosed.

With each iteration more space is opened to embrace the body I have rather than the body I might wish for. I have not over eaten, under injected, or allowed myself to be bullied by well-meaning medical professionals in response to diabetes for a very long time.

I don’t fight diabetes anymore. Fighting is violent, and utterly exhausting. Viewing my relationship with diabetes as something that is in fact - sacred - allows me to put my sword away, sit down, and open myself to the world. Sacredness suggests awe, reverence. 

What could be more worthy of reverence than life where there should be death?

Conscious awareness allows me to say ‘yes’ diabetes is hard, unjust, but it also simply is.

Thirty-three years with a chronic illness has taught me that my only option is embracing chronic illness as part of myself in the same way you might embrace a beloved activity or even a young child. Diabetes needs my attention. Most of all it needs my empathy. Embracing chronic illness allows me to take diabetes by the hand, and guide it as to how I want to live as if it is a small creature who I must keep safe at all times because if it is safe then so am I. I find that diabetes will negotiate with me; yes we can do this today but I am sorry, we can’t do that. And because of the imperfect miracle of insulin, if diabetes and I fall out, we can always try again, tomorrow. 

[1] Edwin A.M Gale; The Rise of Childhood Type 1 Diabetes in the 20th Century. Diabtes. 1 December 2002: 51 (12): 3353-3361.

[2] Sze M Ng and Astha Soni; Ten Year Review of Trends in Children with tpe one diabtes in England and Wales. World Journal of Diabetes. 15 August 2023: 14 (8): 1194-1201.

[3] Feudtner Chris (2003) Bitter Sweet; Diabetes, Insulin and the transformation of Illness. The University fo North Carolina Press: Chapel Hill and London. P9-10

[4]https://www.diabetesaustralia.com.au/blog/the-challenges-of-diabetes/ accessed 31 July 2024.

[5] Donald S Fong et al for the American Diabetes Association; Retinopathy in Diabetics. Diabetes Care1 January 2004; 27 (suppl_1) s82-s87.

[6] Shefali Tsabary (2014) The conscious Parent. Yellow Kite, London.