Raising Awareness of Hidden Disabilities

When we think of a disabled person, usually the first image that comes to mind is somebody with a physical disability who requires a prosthetic limb, walking aid, or a wheelchair to get around.

Few people will immediately think of those who have invisible, or hidden, disabilities. By their nature, a hidden disability is not obvious just by looking at a person, although for the individual, it can be as debilitating and challenging as any other type of disability.

This can lead to situations where a disabled person is assumed to be able-bodied, which can lead to conflict, embarrassment, and prejudice. Today, we look at a few conditions that cause hidden disabilities and some of the problems people with hidden disabilities often face.

What Are Hidden Disabilities?

Hidden disabilities, and chronic illnesses that often cause them, can leave a person feeling weaker, both physically and mentally, and less able than many people with more obvious physical disabilities.

There is still a lack of understanding and awareness of the problems that many people face. Many hidden disabilities are caused by neurological conditions, and there are many forms of disability that you may be aware of but may not have considered as a disability.

It is important to note that not all chronic illnesses cause hidden disabilities. They are effectively two different things. However, many people with a chronic illness develop a hidden disability. For instance, hearing loss, visual impairment, and chronic back pain are all forms of hidden disability. These disabilities vary in severity, and it is sometimes difficult to know when a medical problem, such as worsening eyesight, becomes a disability.

However, when a person's eyesight means they can no longer drive, they lack the confidence to travel on public transport alone, their hearing loss makes it difficult to communicate in crowded areas, or their back pain becomes so severe that they struggle to sit or walk, they are classified as having a disability.

Not all hidden disabilities are related to impairment and pain. Conditions such as autism and dementia result in reduced mobility due to the mental challenges involved in getting out and about.

Common Types of Hidden Disability

Here are some of the most common forms of hidden disability. This is by no means a comprehensive list.

Fibromyalgia: This is a common cause of chronic musculoskeletal pain and often also causes severe tiredness, restless leg syndrome, bowel and bladder problems, sleep disorders, and memory problems. It is often present in people suffering from depression, anxiety, and post-traumatic stress disorder.

Chronic Pain: This refers to any condition that results in permanent pain. It can be caused by back pain, bone disease, trauma, or even phantom limb pain following amputation. The pain can be so severe that it reduces mobility and mental clarity. Pain also disrupts sleep, leading to sleep deprivation, which can become a disability.

Mental Health Conditions: Many mental health conditions are now classified as disabilities, including autism, depression, ADD (attention deficit disorder), agoraphobia, and schizophrenia. All can result in increased isolation and dependency on others.

Chronic Fatigue (CFS): Also known as myalgic encephalomyelitis (ME), this condition can be extremely debilitating, causing physical weakness, constant tiredness, and difficulty concentrating. It’s hard for a healthy person to understand how severe chronic fatigue can be. Imagine feeling so tired that you cannot keep your eyes open, struggling to think clearly, and just wanting to sleep—then imagine experiencing that all the time.

Chronic Dizziness: This disability is often caused by problems in the inner ear, which can impair walking, driving, working, sleeping, and other tasks. If you have experienced vertigo, you know how disabling it can be—it can prevent you from walking, driving, reading, standing, and may leave you feeling scared and confused. Tinnitus, headaches, and nausea are often associated symptoms.

Learning from Expert Patients

The first time I met somebody with a hidden disability was when I was studying health sciences at college. One of the students looked well, so I was surprised when she mentioned using a wheelchair for events and outings.

She explained that she could quickly become exhausted if she wasn’t careful. She could drive to college and walk short distances, but a train trip to London or a day-long event would drain her physically and mentally.

A wheelchair helped her conserve energy. A significant lesson in health sciences is to learn from expert patients—those who have lived with a condition for many years often offer invaluable insights beyond textbooks.

Reading definitions of hidden disabilities can only go so far. Hearing personal stories provides a more profound understanding of how a lack of awareness can cause distress, upset, and embarrassment.

Many disability bloggers and social media influencers have openly shared their experiences, and we’ve invited a few to share their stories here.

A Shopping Experience

One of our customers had an unfortunate incident in a CareCo showroom recently. Johannah Sangster agreed to share her interaction with a staff member when she visited our Norwich showroom to buy a powerchair.

The store assistant initially assumed she was shopping for someone else, saying, “I assume it’s not for you,” and, when corrected, replied, “But you’re a young lady.” This left Johannah feeling “upset, disvalued, and undeserving.”

Such comments can be challenging for someone adjusting to a new disability. We invited Johanna back, and she ultimately purchased a Foldalite powerchair. We’re pleased to report that staff training has since been enhanced to prevent similar incidents. Education and awareness about hidden disabilities are essential, not just regarding physical effects but also mental impacts.

Hostility Towards Hidden Disabilities

Many individuals with hidden disabilities have experienced hostility. Some have faced criticism for using disabled parking bays, sitting in designated seating, or using disabled restrooms. These actions can cause significant anxiety and embarrassment.

Paddy McGuinness shared an experience on Twitter, recounting how someone challenged him for using a disabled parking bay while accompanied by his autistic children. Only in August 2019 did the government allow individuals with hidden disabilities to access Blue Badges.

Awareness is improving, but there is still more work to be done.

Shouted At For Using Disabled Toilets

Kirsty Lloyd’s story made headlines when a Pret A Manger staff member shouted at her for using the disabled restroom, causing embarrassment and shock.

Kirsty, who has Common Variable Immune Deficiency (CVID), carries a disability card to verify her status, but she’s tired of explaining her medical information to strangers. And why should she have to?

Hidden Disabilities Sunflower

Some companies have adopted the Hidden Disabilities Sunflower lanyard scheme, devised by Headway for use in airports. Gatwick, Heathrow, Sainsbury's, Tesco, and others offer lanyards with a sunflower design, indicating that wearers may require additional support.

Services include extra time at checkout, bag packing, lip reading assistance, simplified language, help with hard-to-reach items, and increased awareness of behavioural needs.

Most misunderstandings arise from a lack of awareness about chronic illness and hidden disabilities. With longer lifespans come more chronic health conditions, and hidden disabilities will likely become more prevalent. Without understanding, more stories of abuse and harassment will continue.

We should all strive for empathy and understanding, especially towards those who may not outwardly appear disabled. Rather than being critical,