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 were 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 also look at 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 neurological conditions and there are many forms of disability that you will be aware of but may not have considered a disability. It is important to note that not all chronic illnesses cause hidden disabilities, they are effectively two different things, but, 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 – all have varying levels of 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, or they lack the confidence to travel on public transport alone, or when their hearing loss means that they cannot easily communicate in crowded areas, or when their back pain becomes so severe that they can no longer sit down or struggle to walk, then they are classified as having a disability.
Of course, not all hidden disabilities are related to impairment and pain. Conditions such as autism and dementia result in reduced mobility due to the mental challenge 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 it reduces mobility and reduces 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 a person becoming more isolated, and children and adults alike are often more dependent on other people.
Chronic Fatigue (CFS): Also known as myalgic encephalomyelitis (ME), this can be extremity debilitating, causing physical weakness, constant tiredness and difficulty concentrating. It has hard for a healthy person to understand how bad chronic fatigue can be, but consider times when you have been so tired you cannot keep your eyes open, you struggle to think clearly, and you just want to curl up and sleep, then imagine what it would be to experience that all the time.
Chronic Dizziness: This is another disability that is not understood by most people. It is usually caused by problems in the inner ear, and can result in impairment when walking, driving, working, sleeping, and other common tasks. If you have suffered from vertigo you will know how bad it can be – it can stop you driving, walking, reading, standing, and leave you feeling scared and confused. Tinnitus, headaches and nausea are also experienced.
Learning from Expert Patients
The first time I met a 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 said she also used a wheelchair when attending events and on days out. I was certainly not the first person to ask why this was so, and she happily explained how she can quickly become utterly exhausted if she is not careful. She could happily drive to college and walk the short distance from car park to classroom, but didn’t have the energy needed to catch a train to London without the aid of a wheelchair, and she found attending all day events mentally and physically draining. A wheelchair was a vital tool to help conserve her energy.
One of the most important lessons taught in health sciences was to learn from expert patients – often you can learn far more from talking to somebody who has lived with a condition for many years than you can ever hope to learn from a text book. Reading definitions of hidden disabilities can only go so far in helping improve understanding of the conditions. A better way is to hear stories from people who suffer from the conditions, who can share their experience of how a lack of understanding by others has caused distress, upset and embarrassment. Many disability bloggers and social media influencers have talked openly about their own personal experiences of this, and we have 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 came to our Norwich showroom to buy a powerchair. The store assistant started by saying to her ‘I assume it’s not for you’, and then when being told it was, responded with ‘but you’re a young lady’. It left Johannah feeling “upset, disvalued and undeserving”. It is very easy to dismiss such comments, but for somebody who may still be coming to terms with living with a disability, it can be very difficult. We invited Johanna back and she went on to buy a Foldalite powerchair.
We are glad to report that training has been provided in our store to ensure this does not happen again. We expect all our staff to show understanding and compassion to all customers. The key really is in education and awareness about hidden disabilities, not just how they affect people physically, but how people are affected mentally.
Hostility Towards Hidden Disabilities
Many people with hidden disabilities have experienced hostility directed towards them at some time. We have heard stories of people being attacked for using disabled parking bays, for sitting in disabled seating on public transport, being accused of not being disabled enough to use the disabled toilet, and asked if they are purchasing mobility items for a parent or grandparent, rather than themselves. All these actions can cause upset, anxiety and embarrassment for those affected.
Paddy McGuinness recently shared his experience on Twitter. He has two autistic children and was approached by a stranger who challenged him for using a disabled parking bay. It was only in August 2019 that the government allowed people with hidden disabilities, such as autism, to access Blue Badges for the first time. Awareness is improving , but there is still more work to be done.
1. Just had a deep breathe and walk away moment. Dropped my little ones off at a play centre. Parked in a disability space while they got out. Had all our relevant disability badges on display only for some bell end to come over and tell us that we don’t look disabled? #ignorance
— Paddy McGuinness (@PaddyMcGuinness) November 3, 2019
2. I took a deep breathe and sent my children in. Luckily they didn’t understand what was going on? Once they’d happily gone in I approached this ignorant tool. All I wanted to do was bounce him off every car but there would only be one loser in that, me! #ignorance
— Paddy McGuinness (@PaddyMcGuinness) November 3, 2019
3. Instead I tried to explain to him that not all disabilities are the same? The ignorance and sheer pomposity of telling someone they don’t look disabled really makes my blood boil! How does someone have to look to have a disability? #ignorance
— Paddy McGuinness (@PaddyMcGuinness) November 3, 2019
Shouted At For Using Disabled Toilets
Kirsty Lloyd’s story hit the news last year when a member of staff at Pret A Manger shouted at her for using the disabled toilets, which embarrassed and shocked her. Kirsty suffers from Common Invariable Immune Deficiency (CVID) and carries a disability card to prove that she is disabled, but says “I am sick of having to disclose my medical information to strangers.” And, why should she?
Hidden Disabilities Sunflower
Some companies are adopting the Hidden Disabilities Sunflower lanyard scheme, which was devised by Headway to be used in airports. Gatwick, Heathrow, Sainsbury’s, Tesco, and other major stores and venues have recently started offering shoppers with hidden disabilities a lanyard with a sunflower design. Sainsbury’s started in February this year in just 29 stores, but will now be rolled out across all Sainsbury’s and Argos stores. Customers with hidden disabilities, including dementia, autism, visual or hearing impairment and anxiety, are invited to wear a discreet lanyard that will alert staff members that they may require additional support.
The support that can be provided with a lanyard includes:
- more time at the checkout
- packing your bags
- speaking face-to-face to allow lip reading
- using clear and easy-to-understand language
- help with hard-to-reach products
- making others aware a person may be struggling or have behavioural issues.
Most problems arise simply from people not understanding the problem of chronic illness and hidden disability. Improvements in medicine and longer life expediencies is great news, but with it comes an increase in long-term and chronic ill health. Hidden disabilities will therefore become more common and without more understanding and awareness, there will be more stories of people being abused and harassed by people who presume that they are not disabled.
We should all strive to improve our understanding of the issues others face, and be more compassionate towards everybody in society that is suffering. When we see somebody that looks well using a disabled toilet, sitting in a disabled priority seat or buying mobility products, rather than be critical we should all strive to be more helpful and understanding.
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