Sixteen years ago, my doctor told me that “if you manage your diabetes right you will live a normal life, just like anyone else” and it’s something I’ve just always believed.
I have Type 1 Diabetes, an autoimmune disease that means my body’s immune system attacks and destroys the cells in my pancreas, which produces the hormone insulin. Without insulin I will die. So, to stop myself from dying every day, I inject insulin to regulate my blood sugar levels.
I have lived functionally with my diabetes for most of my life. To the people I sit next to on the tube, or to the barista I chat to whilst getting coffee, I look just fine. I don’t look ill. I look normal. What they don’t know, and don’t see, is the work I have to put into my diabetes on a daily basis to be able to live my life.
They don’t see me pricking my fingers and injecting insulin numerous times a day to manage my blood sugar levels. They don’t know that I have to work out the exact carbohydrate content of everything that I eat. And they don’t know that I have to think about how exercise, stress, dehydration, and even how the weather, can affect my blood sugar levels.
“To the people I sit next to on the tube, or to the barista I chat to whilst getting coffee, I look just fine.”
2020 shone a light on many things, with the term ‘hidden disability’ or ‘invisible disability’ being one of them. It was the year that I found out that my diabetes isn’t just a disruption to my life, but a disability.
Initially, I felt numb to this label. I didn’t feel as though I had the right to accept it, as everything I had been told throughout my life contradicted it. My diabetes doesn’t stop me from going out with my friends. I can go to gigs and festivals, and have the freedom to travel without a second thought. I could even run a marathon if I fancied it. It didn’t feel right using the term ‘disabled’, when I compared myself to the lives of others who did.
I sat with this uncertainty for a while. To help me somehow organise my eddying thoughts, I googled the term ‘invisible disability’. I discovered that disability isn’t a binary, but a spectrum. For years, I always thought that you were either disabled or not. This idea of a spectrum was new and made sense to me. The word ‘disabled’ felt so serious to me. And the fights I face everyday with my condition didn’t seem severe enough to be labelled with a word so profound. The notion of a spectrum validated my smaller battles.
“This was the year that I found out that my diabetes isn’t just a disruption to my life, but a disability.”
I now understand that by telling myself that diabetes was something I just had to deal with was in fact wrong. It’s something I have to deal with and manage myself – yes, but external factors can help and hinder too. So many examples come to mind where I have experienced stressful and almost dangerous situations. And all because my mindset was fixed in telling me I wasn’t any different.
I have missed being able to eat at work because shifts have been busy. And this then caused my blood sugar to drop dangerously low. This is known as hypoglycaemia and symptoms include: blurred vision, clumsiness and seizures. Whilst in this state, I’ve made mistakes that I’ve been cautioned for at work, and have put myself and others at risk. But if I had just told my manager about my diabetes, then these situations could have possibly been avoided.
I’ve not been allowed to bring sugary drinks into music venues to treat hypoglycaemia, even after explaining to security staff that there is a medicinal reason for them. I usually just get a ‘sorry that’s the rules’ and my medical support is thrown in the bin.
The most embarrassing moment was being denied a priority seat on the tube. This denial came with the response ‘you don’t deserve a seat if you’ve had too much to drink’, when again I needed to treat hypoglycaemia. These may all sound like trivial issues, but the repercussions are so severe to my daily life, and makes ‘just’ getting on with my diabetes that much harder.
“Learning that my condition is officially classed as a disability feels like I’ve been given a step to stand on.”
Others may not like to identify with the label of being disabled, but to me it’s empowering. The stresses and anxieties I feel, now feel justified. Learning that my condition is officially classed as a disability feels like I’ve been given a step to stand on. I now feel encouraged to fight my corner whenever I need to.
Some people may not believe that diabetes deserves to be included under the term ‘disability’. And I guess there is still a part of me that thinks that too. Unlearning what I was told when I was first diagnosed is hard, and something I’m still working on. But disability is a spectrum, and taking ownership of this label has given me strength to accept my diabetes for what it is – a disability.
To me, this label doesn’t define who I am. I see it as just another fact about myself. So to finish: my name is Ruby Flanagan and I have an invisible disability.
Ruby is a 24-year-old freelance writer from Manchester. She dabbles in reviews, long-form features and personal essays, about diabetes, culture, current affairs, music, theatre and the arts. @RubyFlanagan27
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