Rebekah says Type 1 diabetes means she has to take excellent care of herself
I am a 24-year-old post-graduate student, from London but currently living in Edinburgh. I was diagnosed with type 1 diabetes at age 16, with blood sugars over 50mmol/l, resulting in a near fatal case ofDiabetic Ketoacidosis(DKA)
Like most 16 year olds in the UK, I had just completed my GCSEs. Throughout these I can remember constant fatigue, frequent urination and a desperate thirst. I had also lost a lot of weight (though I felt like I needed to eat all the time). But everyone was stressed during GCSEs, and knowing nothing better than my own reality, I thought we were all feeling the same.
After GCSEs I went to celebrate at Glastonbury festival and things got a little weirder from here on. All things considered I was pretty out of it at the time, but I can remember snippets. I had gaping wounds on my heels from my wellies that refused to heal; much to the frustration of my friends, I made us stop almost every 10 minutes for me to use the bathroom; and I have a vivid memory of wrestling a friend of mine for the last sip of her bottle of water.
I came home from Glastonbury, did one day of work experience at a TV production company and passed out in their prop cupboard. It was only then that I started to do some research and self-diagnosed. The next morning I went to the GP, she tested my blood, looked horrified, and sent me immediately to A and E.
And that was it. I had gone from being an invincible teenager, at the beginning of my life, no obstacles in my way, to a hospital bed with a drip in both arms, learning how to inject on a foam tummy.
I really struggled with the diagnosis for a long time. In the early staged, when my pancreas produced a little insulin, I fantasised about the doctors having got it wrong. I thought that one day I would wake up and be free again.
I despaired that my life was over, not only because of the extensive daily routine of injections and blood tests, but also all the long-term complications I began to read up on. I assume that most 16 year olds don’t spend their days thinking about amputation, blindness or kidney disease. Contemplating these things threw me into a deep depression.
Something I also struggled with was societal ignorance about the disease, particularly over the difference between Type 1 and Type 2 Diabetes. I can recall people telling me that it could be reversed; questioning why I wasn’t fat; telling me I could manage it with diet or asking if it was because I ate too much sugar as a child. I often feel fed up of rehashing the same speech about how type 1 diabetes is an autoimmune disease, and that by reasons beyond my control, my pancreas is kaput and that there is no way to change this (no diet, no exercise, no herbs, no homeopathy). To this day, I find that the societal ignorance and misinformation can make being type 1 diabetic a very isolating experience.
Being type 1 diabetic has had a huge impact on my mental health. Thinking like a pancreas is a full time job, and makes me really prone to burn out. Sometimes I can see inadvertent benefits to this, I have to take excellent care of myself and I’ve been pushed towards a slower and gentler pace of life that I may otherwise not have adopted. But most of the time I feel frustrated that the levels of effort I put in to trying to keep my BGs in range will never add up to a totally health body. The key for me is acceptance, and I’ve found a lot of solace in speaking to other type 1 diabetics about our shared struggles.
At the moment I am really struggling with adjusting to wearing both an insulin pump and the freestyle libre flash glucose monitor. These technologies have revolutionised my life, and made the tight rope walk between high and low easier to navigate, but they’ve also revealed to me the high levels of shame I have about my diabetes being visible. Having to adjust to a new body image, one involving wires and machines, is a strange and difficult task.
However, I am also incredibly excited about the potential for technology to carry some of the burden of self-management and calculations, and I’m interested in how being a cyborg is becoming incorporated into my identity.
If there’s one message I could send to newly diagnosed, or younger type 1 diabetics, it’s that your life isn’t over. Just like any other chronic and debilitating condition, it creates struggles and extra everyday concerns. But with some forethought and pre-planning I’ve managed to do almost everything your average young person does (FYI going travelling involves using a lot of frio packs, and backpack twice the size). When I was first diagnosed, I felt like type 1 diabetes had usurped all other parts of my identity. Due to the demanding nature of self-management, type 1 diabetes is still ever present on my mind today and a large part of my identity, but now I see that there is room for me to be lots of other things too.