Encephalitis – an invisible disability
Every year, between 20-26th October, we celebrate Invisible Disability Week which was founded by the USA-based non profit organisation Invisible Disabilities Association (IDA) in 2014.
The aim of this campaign is to promote awareness, education, and support for those living with an invisible disability and their families around the world.
Global statistics on invisible disabilities lack accuracy and comprehensiveness due to the inherent challenge of identifying and documenting these conditions. In the UK, it is estimated that 1 in 5 adults live with a disability, and more than 80% of these have an invisible disability. Globally, the World Health Organization estimates that 1 in 6 of us live with a disability.
But what is an invisible disability?
Invisible disabilities, often referred to as hidden, less-visible or non-visible disabilities, are disabilities that are not immediately apparent. Unlike visible disabilities, which may be physically evident, invisible disabilities are conditions that affect a person’s functioning in ways that are not always obvious. These conditions can impact enormously on an individual’s quality of life with consequences on daily lives, relationships (family and social), school, and career prospects.
Is encephalitis an invisible disability?
Encephalitis (swelling of the brain) can leave people with a brain injury that often results in invisible symptoms. The after-effects of encephalitis can include invisible challenges such as cognitive deficits (memory loss, reduced attention, and impaired decision-making), emotional changes (anxiety, mood disorders, mental health difficulties), behavioural shifts (personality changes and anger management issues), or sensory disturbances—all of which are often difficult for others to see and understand.
Very often, adults recovering from encephalitis are told “you look exactly like before the illness, so there must be nothing wrong with you”. At school, children are sometimes perceived as lazy or not well behaved when the actual reason may be the fatigue they are left with, or the attention, concentration or sensory problems.
Why there isn’t more understanding?
There is often a lack of awareness of the brain injury as a result of encephalitis and an assumption that all is ok and “back to normal” once the person is discharged.
Sometimes, there can also be a denial or a refusal to accept the situation especially after such a traumatic acute illness. It can appear to be easier to deal with a problem by pretending it doesn’t exist. It could be the fear of not knowing what to do/say that could make us not want to see the invisible disabilities of those around us.
Lack of support and understanding from others can make it difficult for people to acknowledge their struggles, seek help, or move forward – regardless of the underlying reasons – ultimately impacting their recovery and mental health. Some people may not even be aware that their difficulties are because of encephalitis (e.g. encephalitis very early in life, lack of insight into possible consequences).
Services, if available, more often have limitations or tick boxes that don’t fit the special nature of a disability after encephalitis. Recalling one of the experiences of encephalitis – somebody was asked by a social worker if they can shower themselves – a YES/NO question. The physical act of showering was not a problem. However, the person’s memory was impaired in such a way that they couldn’t remember they need to shower. But this wasn’t asked on the social care questionnaire.
What can we do to improve?
In some parts of the world, awareness of some invisible disabilities has slightly increased. Tools such as the Hidden Disabilities Sunflower or condition-specific cards (e.g. encephalitis help card) which allow an individual to voluntarily share that they have a disability or condition that may not be immediately apparent – and that they may need a helping hand or understanding – are helpful.
At Encephalitis International we strive to raise awareness of invisible disabilities caused by encephalitis among those affected, their families, friends, classmates, work colleagues, employers, healthcare providers, and the general public. We need to let others know what it means to live with an invisible disability. If you want to help us and share your story, please get in touch with us
An informed, patient, kind, and non-judgemental attitude can make a huge difference to somebody’s life. We must remember that a person’s behaviour may be influenced by invisible challenges, including the effects of encephalitis.