Non-visible disabilities: Living with a hidden disability

A non-visible disability, also referred to as a ‘hidden’ disability or an ‘invisible’ disability, is a term used to describe any disability which has no, or little, visible signs to others. It is estimated that 70 per cent of disabilities in the UK are non-visible.

Globally 1 in 7 people live with a disability. Of those, 80 per cent are invisible, equating to one billion people who are living with a non-visible disability.

A non-visible disability can be physical, mental or neurological. Being invisible makes it an additional challenge, as others cannot immediately ‘see’ the reason why a person may be struggling or behaving in a specific way. This can lead to negative judgement or misunderstanding.

Having an awareness of different types of non-visible disabilities makes it easier to spot the signs of this in others, understand why difficulties are present, and make it possible to offer help or assistance where appropriate. 

Examples of hidden disabilities

Autism

Autism is a neurodevelopmental disability which affects the way that people see and interact with the world around them. 

It is a spectrum condition, meaning that an autistic person can fall anywhere on the spectrum. Because of this, the symptoms and presentation of autism tend to be different from person to person (although there are shared characteristics).

Autistic people might:

• Find it hard to communicate and interact with other people
• Find it hard to understand how other people think or feel
• Find things like bright lights or loud noises overwhelming, stressful or uncomfortable
• Get anxious or upset about unfamiliar situations and social events
• Take longer to understand information
• Do or think the same things over and over

Autism means that a person’s brain works in a different way, and it isn’t something to be treated or cured. However, as autistic people’s thought processes and behaviours often deviate from the ‘norm’, it’s not uncommon for them to face judgement or negative preconceptions when in a social setting.

In a video created by the NHS, people who live with autism provide their accounts of what the condition means for them, both positively and negatively. 

Speaking of his experiences in the video, Adrian says “In the workplace, it could be a comment, a flippant comment you make to somebody, it could be something you brush aside with no emotion (I’m talking about myself), you can’t help but being looked at as a bit of a strange one, you know ‘he’s a bit strange, that was a bit weird wasn’t it?’… That’s just going to happen, that’s human nature.

“But I’ll tell you this: the moment you say, ‘actually I’m a diagnosed autistic person’, the tolerance levels change in others. They can take more of your peculiarities.”

Cognitive impairment

Cognitive impairment is a condition where a person has difficulties with their mental abilities, such as memory or thinking. This will be noticeable in comparison to what is expected of a ‘healthy’ person of the same age.  

The condition is closely linked with neurological illnesses such as dementia and Parkinson’s, but it isn’t an exclusively symbiotic relationship; a person may suffer from cognitive impairment for many different reasons, both short and long term.

Some causes of cognitive impairment include:

• An infection such as a UTI or pneumonia
• Side effects of medication
• Conditions such as a tumour, blood clot or a stroke
• Depression or anxiety
• Stress
• Low nutrient levels

The symptoms of cognitive impairment will differ depending on the severity and stage of the condition.

Symptoms of cognitive impairment can include:

• Memory loss
• Finding it difficult to pay attention or being easily distracted
• Poor or compromised judgement, and feeling stressed when making decisions
• Struggling to find the correct words to use or understand information being received
• Increased irritability
• Anxiety and/or depression

People with a cognitive impairment may find it difficult to carry out normal tasks, and this will likely be noticeable to other people. If others aren’t aware of the condition, they might assume that a person is being lazy or not paying attention, particularly if the person is younger.

Mental health conditions

A mental health condition affects how a person thinks, feels and acts – ultimately having an effect on mood and behaviour. 

Mental health conditions can include (but are not limited to):

• Anxiety
• Panic attacks
• Depression (including post-natal)
• Bipolar disorder
• Eating disorders
• OCD
• Psychosis
• Schizophrenia
• Trichotillomania

Mental health conditions are wide ranging, meaning the symptoms and the severity of these differ drastically too.

For example, a person with an anxiety disorder might experience the following symptoms:

• Irritability
• Restlessness
• Fatigue
• Having difficulty concentrating
• Struggling to sleep
• Feeling tense

Although there is an increased awareness and better understanding of mental health conditions now, there may still be a difficulty in understanding why a person cannot stop themselves from behaving or thinking in a certain way. This lack of understanding can make daily life a struggle for people living with mental health conditions and may even worsen them over time due to the negative stigma. 

Visual impairments or restricted vision

Around 2 million people in Britain are living with sight loss, with around 300,000 of these people being registered as blind or partially sighted.

The challenges created by a visual impairment will differ depending on the severity of the condition as well as the environment they are in. For example, when in their own homes, a person with a visual impairment is likely to be able to carry out daily tasks as normal, as they know where everything is and how the environment is laid out.

When in unfamiliar or changing environments, people with a visual impairment may use aids such as:

• A cane
• A guide dog
• A global positioning system (GPS)

This makes the disability more visibly obvious to others, but it doesn’t always mean that people understand the type of awareness they need to have in response to the disability – such as not stroking or distracting a working guide dog. 

Although visual impairments occur for a variety of reasons, macular disease is the biggest cause of sight loss in the UK, and around 300 people each day are diagnosed with the condition. 

The Macular Society is a UK charity aiming to find a cure or additional treatment for macular disease through further funding and research. 

Unfamiliar or busy environments can sometimes be daunting for people with a visual impairment, or they may just take a little longer to figure out the environment and where they want to go. It’s important that people are given the space and time they need to navigate the world in a safe and inclusive way. 

Hearing loss and deafness

Hearing loss affects 1 in 6 adults in the UK, and there are estimated to be around 2 million people using hearing aids. It commonly affects people as they get older, but it can affect young people too.

Signs of hearing loss include:

• Difficulty hearing other people clearly and misunderstanding what they say, especially in noisy places
• Asking people to repeat themselves
• Listening to music or watching TV with the volume higher than other people need
• Difficulty hearing on the phone
• Finding it hard to keep up with a conversation
• Feeling tired or stressed from having to concentrate while listening

The restrictions during the pandemic had a negative impact on many people living with a hearing impairment. Measures such as face masks and social distancing made communication difficult.

This is because:

• Many deaf people rely on lip reading to understand others
• British Sign Language (BSL) is made up of signs accompanied by facial expressions. Without a facial expression, the meaning of a sign could be misinterpreted

Health conditions 

Not all heath conditions can be classed as a disability, it is only when a health condition has a ‘substantial’ and ‘long-term’ negative effect on a person’s ability to carry out daily activities, that a condition is termed as a disability. This is according to the definition of a disability under the Equality Act 2010.

Health conditions that classify as a disability can include:

• Chronic pain
• Crohn’s disease
• Diabetes
• Encephalitis
• Chronic fatigue
• Sleep disorders
• Incontinence

As with other non-visible disabilities, people with non-visible health conditions can often find it difficult to access the support or resources they need due to a lack of understanding or awareness. Especially as the symptoms and presentation of different conditions drastically vary. 

Encephalitis

Encephalitis is an inflammation of the brain. It can be caused by a virus or an autoimmune response. If not treated quickly, it can have serious effects and even be fatal. The disabilities people are left with can be visible and invisible. 

Bella Bunsen had NMDA receptor encephalitis in 2012, caused by the growth of brain cells on a teratoma that her body responded to by attacking her brain. Now a gifted and vivacious content editor, Bella shares her views on living with an invisible disability.

“Encephalitis left me with an invisible disability. I couldn’t function properly for a long time. I got a lot of sympathy when I was in hospital but that was the easy bit. It was getting on with life afterwards that was difficult.

“My main issues were memory and being able to take in and understand information. My brain didn’t work properly. I’d describe it as feeling like my head was full of glue.

“A lot of the damage was to the frontal lobe of my brain so my whole personality changed. I went into hospital as a moody teenager and came out very happy and childlike. I wasn’t the same person and was very, very impulsive and reckless. My inhibitions and ‘is this an appropriate thing to say’ filter had mostly gone, and I had big highs and lows emotionally. I probably seemed mad to other people.

“After a year of recovery and treatment, I went off to university and got loads of disability support, which was great. I couldn’t have done the course without it. The disability did bring me really good things. It was great for my career because I had no fear in going for jobs and I wouldn’t have had the fun I did if I was still shy and sulky as I had been previously. I was also very lazy and unambitious before. But when I finally got to go to Uni I appreciated that I was lucky to be there, worked really hard and now I’ve got an MA and a CELTA. There’s no way I’d have had the drive for that without having been ill.

‘It feels like a pity party or making an excuse’

“Pretty much everyone was really good about my disability during those years. I suppose a really annoying thing about having an invisible disability is explaining it all the time. It feels like a pity party or making an excuse and it’s not exactly a fun thing to drop into a conversation. I wanted people to know there was the reason I was the way I was though, because it could be embarrassing.

“I’m lucky that mine does get better over time. Ten years on, it never needs to come up now, and my memory and behaviour are fairly normal again. The emotional bit’s all gone. I used to cry every day and I never do now, though I do miss that rollercoaster in a strange way. I’ve been teetotal for a long time now and that’s sped up recovery. I’d recommend it to anyone wanting to improve their cognitive function, also learning to manage stress and just looking after yourself physically.

‘People are kinder than you realise’

“I think my advice to people with invisible disabilities would be don’t worry about how you look to other people. You’re much more aware of it than others and they probably don’t notice anywhere near as much you think, least of all judge you. People are kinder than you realise when you’re hard on yourself. Don’t tell people if you don’t want to. It’s nice for people to get to know you a bit and see what they make of you without that label affecting their opinion.

“Keep going and accept help. You can still achieve plenty, even if it is more difficult. Remember that your disability is not your identity, it’s just a part of you. Most of all, accept yourself as you are. Disabilities give gifts as well as challenges. My life would be very dull indeed if I’d never had encephalitis and while I know I was one of the lucky ones in terms of being able to walk and talk and drive and study and work, I wouldn’t change it.”

Myalgic encephalomyelitis (ME)

Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a long-term condition. It can affect people of all ages, but is most common in women, and usually develops between when a person in their mid-20s or mid-40s.

Common symptoms of ME include:

• Feeling extremely tired all the time
• Finding it very hard to do daily activities
• Still feeling tired after resting or sleeping
• Taking a long time to recover after physical activity
• Problems sleeping, such as waking up often during the night
• Problems with thinking, memory and concentration

There is currently no official test for ME, and it is usually diagnosed by ruling out other conditions which could be causing the symptoms. Because of this, it can take a long time to get a diagnosis, and people with ME may need to be persistent to ensure they get the follow up appointments they need.

The symptoms of ME can improve or decline over time, and this can be dependent on a variety of factors. Because of these variations, a person with ME might seem completely fine one day, but then be unable to function the next day. These sudden improvements/declines can make it difficult for others to understand the condition. This misunderstanding can also be heightened as many people with ME prefer to spend the ‘bad days’ in the comfort of their own homes, meaning that other people tend to not see the person at the worst of their condition.

Long Covid

Long Covid refers to the long-term effects of coronavirus (Covid-19). Over the last two years, it’s been proven that Covid can affect people in different ways and for different periods of time. Most people will make a full recovery after 12 weeks, so long Covid generally refers to symptoms that continue after this time frame.

Common symptoms of long Covid include:

• Extreme tiredness (fatigue)
• Shortness of breath
• Chest pain or tightness
• Problems with memory and concentration (‘brain fog’)
• Difficulty sleeping (insomnia)
• Heart palpitations
• Dizziness
• Pins and needles
• Joint pain
• Depression and anxiety
• Tinnitus, earaches
• Feeling sick, diarrhoea, stomach aches, loss of appetite
• A high temperature, cough, headaches, sore throat, changes to sense of smell or taste
• Rashes

As it is still a relatively new condition, people living with long Covid may find it difficult to have their symptoms acknowledged, and there is no official test for diagnosis.

If you are living with long Covid, there are some things you can do to help progress your recovery:

• Rest as often as needed
• Progressively increase exercise/activity levels, and don’t overexert yourself
• Plan your day into chunks, giving yourself time to rest between tasks
• Aim to get plenty of good quality sleep
• Look after your mental and emotional well being
• Aim to eat a healthy and balanced diet, and drink lots of water

The Sunflower Symbol

Introduced by Hidden Disabilities Sunflower, the Sunflower is a globally recognised symbol for non-visible disabilities. 

On the Hidden Disabilities Sunflower website, they explain that a sunflower was chosen as it “suggests happiness, positivity, strength as well as growth and confidence and is a universally known flower”.

A member of the Hidden Disabilities team says: “Wearing the Sunflower enables individuals to discreetly indicate that they have a non-visible disability and may need additional assistance, kindness, or simply a little more time.

“The Sunflower lends itself to the care setting perfectly because it is a non-verbal tool of communication, and it tells those around them to take more time. It can also lead to a deeper conversation where the wearer may choose to share what their disability is.

“In the UK 1 in 5 people have a disability, 80 per cent of these are invisible.”

The goal of the Sunflower is to “Make the invisible, visible.”

People with non-visible disabilities can wear a lanyard with the Sunflower to communicate their disability to others. Hidden Disabilities Sunflower have also extended their range to include pin badges and wristbands, for those who may find it difficult to wear a lanyard due to sensory issues or general preference.

You can visit the Hidden Disabilities Sunflower website to find out more, become a sunflower member and buy your own Sunflower.