Geeks Vs Loneliness: Accepting you have a hidden illness

As life trundles on, we sometimes find that our own bodies can trip us up. Knock us sideways with illness, cause us shame and alarm with their responses to outside stimuli. We can carry an illness or disability that we know is there and which causes significant discomfort or everyday hardship – but that other people aren’t aware we are dealing with.

Many things fall under this bracket. Sensory problems, allergies, serious lung disease, or undergoing treatment for serious health conditions – these are often not visible to the casual onlooker.

This isn’t helped by an attitude of anti-entitlement that sometimes prevails in both the media and everyday life. There have been recent reports about people using disabled bays at hospitals being verbally abused because they don’t appear ‘disabled enough’ to merit a space, including a woman receiving treatment for Cystic Fibrosis. (read Simon Stothard’s January 2019 GvL piece about living with this congenital condition here).

Calling people out on public transport for either sitting in priority seating (or indeed, even just sitting down on a full bus) is commonplace. Some travel companies such as First West of England have introduced a card-based scheme, where people can use card signs to indicate that they have a hidden disability or illness, including deafness, or cardiovascular problems that can cause fainting when someone stands for a prolonged period of time.

While other people can struggle to accept or adjust to other people’s hidden conditions, it can make it harder for a person to accept their condition – and any needs arising from it – themselves. I hold my hands up and say, I’m one of them.

At the start of 2018 I caught a virus, which has over-sensitised my immune system to anything with sulphates or salicylate acid in it. If I touch or eat anything with certain chemicals in I have an adverse reaction. My face, tongue, throat and lips swell. My digestive system goes nuclear. From tongue to tail I become a boiling cauldron of leaky crap.

Last week I ordered myself a Radar Key. This is a key that gives wide access to disabled toilets in public buildings. It has taken me 20 months to accept I am worthy of one. I look like a functioning, healthy human. But on occasion, without warning, I lose control of my gut and my bowels, and need swift access to a toilet. Public toilets are in short supply these days. I plan any journey by public transport knowing exactly where the usable bathrooms are en route. I am seeing them become fewer and fewer.

I feel guilty about having a key. I am not physically disabled. I just have a terrible internal reaction to a particular chemical, no matter how careful I am with my diet. The pain can leave me crying on the nearest floor. And when the levy breaks, the outflow from my gut is unstoppable.

We shy away from talking about this kind of topic. In fact we make a joke of it. Popular culture often attributes weak bowels with cowardice and fear. Adults are not supposed to lose control. But this is where I find myself. And have found myself in a dire mess in public.

A Radar Key is a simple solution to a messy problem. It gives me the freedom to travel, to visit town centres and public places without fear of being caught short. I hope I don’t have to use it at all, but if I do it will be without guilt.

I’m accepting that I have a long-term immune system condition that won’t improve, and for which there is no effective medication. And it’s been hard to do. But going through life you realise that everyone needs help in some form or another.

All I ask this week is that we keep an open mind when we see people sitting in priority seating or parking in a disabled bay. Beware of anti-entitlement. Give people the benefit of the doubt. Yes, there are some selfish people out there. I suspect the vast majority are just trying to get by.

Back to Simon’s article. He talks of adopting a positive approach to dealing with whatever is going on under the skin, pushing on with life and finding your strengths along the way. It’s a pretty great message to adopt.

Thanks as always for reading.