Invisible Illnesses - How Do We 'Visibilise' them?

30/09/2016 10:43 | Updated 30 September 2017

This week is 'Invisible Illness Awareness week'. For those of us who fit into this category the opportunity for exposure is quite strange. As someone with an invisible illness I live in two spaces. In my public life I am a healthy looking 23 year old - an age often lamented by those older than myself as the prime time for their body's functionality. In my private life my body is marked with the scars of its inability to function and my mind occupied with the stress of managing a dangerous condition.

When I was 16 I was diagnosed with Type One Diabetes. Often frustratingly mixed up with the Type Two Diabetes, an entirely separate condition. Type One Diabetes (or Diabetes Mellitus) is an autoimmune disease, which is likely genetically predetermined. Since the age of 16 I have become a human pincushion - finger prick tests, injections, infusion sets, all hidden neatly under my clothes. Of course there are awkward instances where its invisibility crosses over into the visible world - I tick a box on a form; I use a disabled toilet to change my infusion set; I sit on the floor of the train because I'm recovering from hypoglaecemic episode and no one knows to give me a seat; I have to explain to people why I'm not drinking; I have to tell an exercise instructor, just in case I pass out in their class.

In fact, the condition is increasingly visible with the advent of new technologies - I used to inject myself in the bathroom or under the table before a meal, but now I carry an insulin pump which sticks out of my pocket (often mistaken for a walkie-talkie). I used to prick my fingers in private, but now I wear a continuous blood glucose meter on my arm. Straddling the visible/invisible divide is a very strange adjustment. As much as part of me has longed over the years for my struggle to be more visible and thus more understood, I find myself wearing longer sleeves, anxious that I will have to have the 'what's that?' conversation with someone. People without chronic illnesses don't usually find themselves telling a stranger "What's this? Without this, I die" - not that I usually put it quite like that.

So what kind of visibility do I want for my illness? It would be nice if invisible illnesses were visible enough in popular knowledge that the burden wasn't on sufferers to unveil them. There have been a few instances where I've got my insulin pump out under the table and someone has whispered something like 'how are your blood sugars? Are you going hypo?' or someone tells me they're familiar with the illness because of their friend/sister/brother/mother/son etc. There's a huge sense of relief when this happens. They're not going to think it's a disease you get from eating badly; they won't bombard me with questions for me; the won't be freaked out that I have cannulas going into my body - but mainly they'll know what to do if I need help.

Having an invisible illness is at its most scary and lonely because of how unsafe it feels. Diabetics suffering a hypoglaecemic episode are often mistaken for being drunk (slurred words, dizziness, shakiness, irritability sweating). But untreated low blood sugars can kill you. Statistics show that as high as 1 in 20 diabetics die from a low blood sugar*. Increased visibility of Type 1 Diabetes, and an awareness of what to do if you see someone 'going low' could literally save lives.

My hope is that 'invisible illness week' provides an opportunity for people to make visible to others illnesses that are for them, so starkly visible in their daily lives. The mental strain of managing a chronic illness is huge. Each day I walk the exhausting tight ropewalk between dangerously high and dangerously low blood sugars - common knowledge about my illness would make that just a bit more comfortable.

*Used by JDRF from studies by P.E. Cryer, T. Deckert, and W. M. G. Turnbridge as well as the Diabetes Control and Complications Trial, the very large, ground-breaking study run from 1983-1993. These studies conclude that the number of deaths from hypoglycemia are between 2% to 10%.