Living with a hidden/invisible disablity

Recently many of us have marvelled at the medal winning performances of the British paralympic team at the Olympic Games in Rio de Janeiro. These amazing athletes clearly demonstrate what a person can achieve while having to live and cope with disability. Some of the athletes had visible disabilities, others invisible disabilities.

What is a hidden/invisible disability?

The list of hidden/invisible disabilities is long but includes a range of mental health issues, chronic ongoing illnesses, diabetes, sleep disorders, chronic pain, HIV, AIDS, Irritable Bowel Syndrome, epilepsy and hearing impairments. Any condition that could impair everyday life could be referred to as a hidden/invisible disability. I have a hidden/invisible disability, I have epilepsy that I have lived with, and struggled with, since early childhood. Unless I tell people about it, disclose my disability and how it affects me, no one would know. That is until I have a seizure when my disability becomes very obvious. 

As a society, we tend to think of disability as something that is visible, something that we can see i.e. a wheelchair or aid of some description. However, there are many people living with hidden/invisible disabilities in the United Kingdom alone.

 Why do they stay hidden/invisible?

Many people fear disclosure of a hidden/invisible disability due to social stigma, prejudice, unfair judgement and negative evaluations of ability. I believe that society struggles with hidden/invisible disabilities due to fear, lack of understanding and knowing how to respond or react. Openness and sharing knowledge generally helps to stamp out stigma. However, disclosure in an effort to fight stigma can result in experiencing stigma as well as social isolation and prejudice.

People who choose not to disclose their hidden/invisible disability can experience stress, anxiety and depression all of which can be hidden/invisible disabilities in their own right. Concealing an invisible disability is hard on a long term basis but many people do so for fear of perhaps losing employment or social connections. The Disability Discrimination Act (1995) has gone some way to protect people with disabilities, but legislation is only part of the solution.

The media and television programs (such as soaps and dramas) have made brave attempts to bring into our living rooms some of the everyday struggles that people with hidden/invisible disabilities face, but much more could be explored.

How does a hidden/invisible disability impact on the self?

Our bodies are an integral part of our concept of our identity. When the body struggles to function, for whatever reason, it can cause low self-esteem leading to many questions about the self: why me? What now? Medical diagnosis can be helpful, especially if there are specific treatments available. However, the person then has the issue of being ‘labelled’ and facing their own perception of stigma and how it will affect them.

Grief and loss will usually be a part of any disability, invisible or visible. One can grieve about the loss of the self that you used to recognise as you learn to adjust to change. Hopefully, in time, acknowledgment and acceptance of these changes will be achieved. In the process, this will often result in health anxiety, feelings of lack of control, fear of the unknown and fear of the future which can all affect self-confidence.

How a hidden/invisible disability impacts on life

A hidden/invisible disability can sadly impact on every part of a person’s life from education, employment opportunities, social relationships, sexual development and relationships and overall quality of life. Sometimes if a person chooses to disclose that they have a hidden/invisible disability the stigma, fear and lack of general understanding can sometimes result in questions about whether the disability is genuine. For the person with the disability, calling into question the ‘legitimacy’ of their disability can be very upsetting.

If a person is disabled in any way self-care becomes very important. That can sometimes mean that they need time to visit medical professionals and have treatments and perhaps counselling support.  They may need more time to complete everyday tasks and more down time to rest and recover.

What can we all do to help?

• Not assume that because you can’t see it that it isn’t real and poses regular challenges for someone. 
• Just because you may not have heard about it does not mean it doesn’t exist.
• Remain open minded and ask yourself if there is more to knowing and understanding someone.
• Try to be open and to resist making judgements about what a person can or can’t achieve based on what you see.
• If you know someone has a hidden/invisible disability ask questions as to how you can be of help.
• Always be open to other people’s needs and be supportive.

Rather than thinking of ‘disability’ let’s all bear in mind that every person has skills, abilities and their own uniqueness regardless of the challenges they may face.