The focus of this year's International Day of People with Disabilities is ‘not all disabilities are visible', shining a light on hidden disabilities. Dr. Holly Hurn, QEF’s Clinical Psychologist, talks about the hidden disabilities that can result from an acquired brain injury (ABI) and how important it is that there is greater awareness to support people trying to cope after such a traumatic life event.  

Disability charity Queen Elizabeth’s Foundation for Disabled People (QEF) based in Surrey, provides expert neuro rehabilitation at its Care and Rehabilitation Centre, enabling people with an ABI following a stroke, brain injury or other neurological condition to rebuild their lives and maximise their independence.

According to the WHO World Report on Disability, it’s estimated that 450 million people worldwide are living with a mental or neurological condition and a further 69 million people sustain a traumatic brain injury each year.  COVID-19 can also cause neurological events such as strokes and seizures and as Dr. Hurn explains, this can mean that more people are living with a series of challenges that can make everyday life difficult.

 “My primary role as Clinical Psychologist at QEF’s Care and Rehabilitation Centre is to support our clients who have had a stroke, ABI or other neurological condition to better understand their diagnosis and regain their confidence and sense of self. Loss of identity can be a significant part of a neurological injury – often people find themselves dependent on somebody else for the first time since childhood. They are fearful for the future and their self-confidence crashes.

We view each person as an individual and seek to understand their values, what drives them and what makes them who they are. We then try to support our clients to reconnect with those values – as in most cases, regardless of what else an injury might rob us of, it can seldom take away one’s core values.  Re-connecting with one’s values can guide someone forwards through a period of uncertainty and draw on the strength they have to get them through this difficult event in their life.  

A brain injury can hugely affect how we process the world around us, so someone may be able to walk and talk with no obvious outward disability, but an ABI can cause hidden disabilities that families and friends may not be expecting. At QEF the Psychology team work closely alongside Occupational Therapists, Physiotherapists and Speech and Language Therapists to enable people start to understand and adjust to their injuries and rebuild their core life skills and independence as much as possible.”

Michael had a seizure during his recovery in hospital from COVID-19 and came to QEF for neurological rehabilitation. On his experience of getting COVID-19, Michael says: “I just went very foggy - foggy in my mind.  I went to hospital and was put into an induced coma. I've lost so much memory - my short-term memory.”  For some people the neurological impact of COVID-19 can create ongoing and hidden challenges, even though the physical condition caused by the virus may have been resolved.

Dr. Hurn continues: “A number of areas of the brain may be affected by an ABI or stroke. It is very common for someone to feel high levels of fatigue and require lots of breaks. Clients have often reported to me that they fear others will view them as ‘lazy’ as they don’t understand how an injury such as this can drain one’s energy so readily.

They may also experience reduced attention span and reduced processing speed which could make something seemingly simple, like following a tv programme, very challenging. Similarly working memory is often affected which can impact on someone’s ability to follow a conversation and retain the content.  These can all be very subtle changes but can make a ‘normal’ day exhausting.

Some people also experience a hyper-sensitivity in certain senses e.g. they could struggle with bright lights (photosensitivity) such as those found in supermarkets, or be very sensitive to sound (hyperacusis), so walking past building sites or being in crowded spaces can be challenging. Headaches are also common after a head injury, as well as vestibular challenges which can cause dizziness and balance difficulties.

An ABI or stroke can also affect our emotions, personality and behaviour. It is common for people to find they suddenly experience a change in their emotions – becoming tearful much more easily, possibly laughing inappropriately at things or feeling much more irritable and easy to snap than they did previously. Others find they become ‘emotionally numb’ and struggle to feel anything really at all.  Emotional changes can be caused by the head injury itself but also by the consequences of the head injury – fatigue, sensory overload, reduced information processing and psychological trauma can all lead to feeling frustrated, anxious or low in mood. It can be hard for friends and loved ones to understand what is going on, as they might observe and be on the receiving end of these emotional changes and not know how best to support their loved one.

Managing stress is also key, as stress itself can slow down and impact on cognitive processing, memory and attention which creates a vicious cycle. Practicing skills such as relaxation or engaging in regular gentle exercise and getting good sleep can all help with this. At QEF we utilise bio-feeedback technology to help clients monitor their own physiological responses to stress and learn how to activate their own state of relaxation. Over the years I’ve found biofeedback a really helpful way to educate clients about the function and importance of relaxation on the body and brain.

As Psychologists at QEF, we aim to give our clients a good understanding of how the factors I’ve mentioned might apply to them and then give them tips and strategies to cope with their difficulties.  We often involve family members in the therapy where appropriate, in order to do our best to prepare and support the client and their immediate support network to facilitate a smooth transition back into the home. We work very hard with families, as well as our clients, to support them and help them try and understand a little bit more about what their loved one might be experiencing, what that person may find challenging and how they can best support them – as well as helping them to deal with their own shock and grief for the life they shared before.      

Our new centre just outside Leatherhead in Surrey provides a beautiful setting to help a client begin their emotional, as a well as physical and cognitive, recovery following a neurological injury. We have beautiful grounds in which to run client relaxation and Mindfulness groups, 1:1 sessions and (COVID-safe) family meetings.

Find out more about QEF's Care and Rehabilitation Centre