The Invisibles

Photo by Majestic Lukas on Unsplash

Boo! We’re here among you - hiding in plain sight- camouflage experts extraordinaire. We look like you; we act like you: we assimilate easily because as alien as we are now, once, we were you! Then something happened: a powder keg of genetics, injury, illness or environmental conditions - perhaps all of them - exploded and we disintegrated, went off the radar. We couldn’t keep up with our studies, our work, our hobbies and so we faded into the background, off the main stage. We became what we are now - invisible. It’s our superpower and our worse trick.  We’re stand-ins, in our own lives.

I rarely mention the fact that I have a clutch of chronic illnesses and disabilitiy. I mean, why would I? Who needs to know? I blend in for the most part. I might be seen as unreliable, when I cancel something at the last minute, but I’m used to my unreliable body that can throw a tantrum, especially  when I’m planning to do something. I’m lucky. I have labels and diagnoses. Hard won, for the most part.  Some people spend decades trying to find out what their weird bunch of symptoms means and whether there’s anything that can be done for them. We live shadow lives between different medical - and often psychiatric - disciplines, being dismissed and disbelieved; being told it’s all in our heads, or ‘womens’ issues’. Best not get my soapbox out on that one -  disparity of investigative treatment between the sexes. Some consultants have barely moved on from the Victorian era, when women could be locked up in mental hospitals for complaining about pretty much anything. More often than not, it’s simply that those doing the diagnosing are not asking the right questions, or feeding people through to those who can, listening to what patients are saying, rather than simply a ‘computer says no’ approach, when a test comes back negative.  We don’t shout, we don’t like to contradict, we’re used to being ignored, patronised and contradicted, so most of us put up with going through the diagnostic mincer and coming out the other end shredded. Sometimes we fight, or other people fight on our behalf, and we might eventually find the right person, who knows what our particular collection of symptoms might mean and how they can be treated; how life can be made  bearable. There’s rarely a cure for things like fybromyalgia, chronic fatigue, EDS and a whole host of other tricksy conditions and syndromes.  We become management specialists: managing symptoms, medications, energy levels and the expectations of others. Shadows in our own lives.

We try to fit in, although we can’t. The world is set up for the well and able.  The way benefits work mean an all or nothing approach, rather than supporting people to do what they might be capable of achieving. If we are able to work, we’re on short term contracts or self-employed or, if we’re lucky, remote working with a ‘real’ job.  Most of us struggle by, or rely on income from partners or a combination of things. I’ve been fortunate to have found third sector jobs with part time hours, that I could largely do from home and then I’ve worked for myself. Now that my health seems to have taken another downward turn and my back and feet won’t support me for long hours in the kitchen baking, that income stream is greatly reduced, down to a mere trickle. We carry on, we smile.  We don’t let on that we’re struggling, that the lack of sleep and the pain mean we can’t focus today or that we don’t have the energy to unload the dishwasher or that we had two days in bed.  Our lives are hidden behind smiles and artifice, not because we are fickle, but because most people couldn’t cope with the reality.  Or don’t want to. People get tired of people who are unwell. They stop asking how we are because if the answer is not ‘fine’ they can’t deal with it; they stop asking us out because they get fed up with us cancelling and when we do go out we can’t drink alcohol and we need to go home early. We are the original party poopers. Our lives redact. Everything enjoyment written out.  We become our condition - or our symptoms anyway.

I’m not actually complaining - though it might seem like that - and I’m not blaming anyone for how they react. We may be hard wired to shun the weak, the ill, those who can’t pull their weight.  Certainly our own western society applauds strength, wellness and youth. Yet our humanity and compassion should give us pause for thought.  Ancient societies are judged by how they treat the wounded and broken: a broken limb mended, meant that someone had put someone else’s need above their own survival.  Our own UK NHS testifies to our intention, though sometimes our attitudes don’t match up.

I’m fortunate to have the support of my husband and my sister and friends who understand how my health - or lack of - impacts my day to day.  Not everyone has that, but everyone deserves that. With the right support, people with chronic illness can contribute something.  We’ve learned a lot on our journeys and can share our experiences with others; we often observe deeply because we are often static, rather than rushing about.  A lot of us are creative, because we need to find activities that we can do at home, sitting down, without burning energy: writing, painting, sewing may be on good days.

As an aside, I would like to point out that our conditions did not ‘happen for a reason’. They did not occur to make us better people or stronger, wiser people.  Some of those things can be the consequence of long term illness - or not -  but saying that is not a panacea for our pain.  Chronic illness occurs because of the circumstance of birth or hereditary, accidents - combinations of events which coalesced to make our bodies stop functioning as they should. We were the unlucky ones, as far as long term health is concerned. You can do everything right and still be chronically ill. Our conditions are often made worse by lack of diagnoses and mistreatment - or neglect.  Navigating pain and exhaustion is of itself both mentally and physically debilitating.  We are not ‘brave’ or ‘resilient’ we are doing what we have to do to survive.  We hide our pain and we try and fit in. We are largely invisible, though we often recognise each other, fellow invisibles, hiding in plain sight.

I don’t talk about my illness or disability a great deal and I’m not courting sympathy now.  I’ve recently read ‘Some of us Just Fall’ by Polly Atkin, which is an eloquent and heartfelt portrayal of someone with chronic illness, and yet it is also, at the same time, nature writing. Polly immerses herself in her surroundings not only because she finds beauty or peace, or even strength there, but because she is forced to live at a pace where she can observe and absorb the world around her. I definitely recommend reading it if you want a glimpse of what living with chronic - and for a long time undiagnosed - illness is like.  Her powers of observation and description about what it’s like to live life and experience the natural world in a faulty body, and the way she communicates that is startling.

Estimates suggest that roughly a quarter of the population in the UK are living with a long term health condition. We are your neighbours, your colleague, your family. We may have super powers of invisibility, but if you look around it is possible to see us. We’re just like you. Don’t be afraid to talk to us, to include us, to try and understand us. One day we could be you.