Invisible illnesses

I visited my Gran today with my Mum. She has vascular dementia (basically dementia caused by the lack of blood flow to the brain). It means that she has a lot of difficulty remembering almost anything from the recent past. It also means that she is unable to make simple decisions like what to eat, when to sleep and when she should be doing something. She lives in a very confused and disorientated state and suffers chronic anxiety because of it. However, her illness is effectively invisible. You only know she has a problem with her brain because you can observe her confused behaviour and listen to her testimony.

This got me thinking about the invisibility of certain illnesses and the stigma which results, in part, from this. Bipolar and other mental health illnesses come under what I would call the category of ‘chronic invisible illness’. They often last significant lengths of time (possibly a lifetime) and they are hard for others to spot. And when I say hard I mean really hard.

For many of us suffering with a mental illness we walk around like everyone else, doing everyday chores, going to work and socialising with friends. We smile, laugh and tell jokes. How would anyone be able to tell that we are suffering from a mental illness? People with mental illnesses are often able to put on a mask for the outside world and cover up their illnesses extremely effectively. Therefore the illness remains invisible to the outside world.

Of course there are times when a person may not be able to cover up their mental illness. Particularly in severe cases of mental illness or perhaps just during a severe episode. I know that when I am acutely ill with a manic or mixed episode of my bipolar that I am no longer capable of acting in a ‘normal’ way. I may rant and rave and pace around making all sorts of strange noises and suggestions. However, no one except immediate family get to see this because I withdraw from social life completely. It is hugely embarrassing and I feel the urgent need to cover it up. The illness therefore remains effectively invisible.

Even in cases where a person with a mental illness acts ill in public, either because of the severity of their illness or because they feel able to be open about their illness, their illness remains invisible in another sense. Perhaps if they are depressed say, their behaviour may include not keeping themselves clean, self-harming, looking exhausted, acting morose etc. Perhaps if they have manic episodes like I do, they would be acting extremely wired, exciteable, talking really fast and incoherently and generally appearing a bit strange. All of these symptoms are visible. The problem is that the actual illness remains strictly invisible. What you observe are behavioural changes in the person. You can’t directly see their mental distress or the strain it is putting on their body and mind.

This brings me back to the case of my Gran and the plight of many others that suffer from ‘invisible’ illnesses. There are other disorders of the brain that can’t be directly seen in physical ways but show up in behaviours. For example asperger’s syndrome, autism and certain brain injuries. There are also physical illnesses that may be effectively invisible to others, perhaps because they have intermittent symptoms or have no obvious cause. Chronic fatigue syndrome is an example of a physical illness which doesn’t always show up symptoms in an ‘easy to observe’ kind of way. The fact that the cause of the illness is not understood adds to the outward invisibility of the illness.

It is often hard to put yourself in to someone else’s shoes. We may feel empathy with people when we know that they are ill. However, our empathy becomes partially compromised either when we can’t directly see the person struggle or when there are no outward signs. What I want to say about mental illness and other kinds of illnesses which remain largely invisible is that it is because of this invisibility that so much more needs to be done to educate people. If we talk about them more and try to describe the difficulties that that person goes through maybe we can go some way towards removing some of the misunderstanding and stigma surrounding these illnesses.