Does it exist if you cannot see it? Life with a hidden disability

The question in the title of this article is particularly relevant to the everyday lives of people experiencing disabilities or health difficulties referred to as ‘invisible’ or ‘hidden’.

There is no doubt that people with disabilities experience certain barriers and challenges unknown to people without disabilities on a daily basis. To overcome these barriers, people with disabilities have to develop individual ways of dealing with them, independently, with the help of others or in the form of more structured, institutional support, in order to fulfil their potential in various areas of their lives.

Some of these difficulties are of physical nature, such as pain or physical fatigue; others manifest themselves as cognitive or social difficulties. Some may be developmental, others acquired. Regardless of the differences between difficulties described as ‘hidden’, it is very important to understand their nature, because in modern societies characterised by longer lifespan and medical progress able to conceal visible signs of incapacity, more and more disabilities are or become invisible.

Common denominator

The term ‘hidden’ indicates that the difficulties a person faces on a daily basis are not visible at first sight, and some may never be identified by the people around him or her. Depending on the type of a hidden disability, it will be easier for some and much more difficult for others to conceal the symptoms typical of these difficulties. However, the need to decide whether or not to disclose one’s disability, and if so, to what extent, is common for people whose health or cognitive difficulties impair their daily functioning in ways that are invisible to others.

Disclosing one’s difficulties is a personal decision, often a very difficult one. One needs to evaluate the gains and losses resulting from such a disclosure. Losses may be related to the fear of being judged or stigmatised, but also trivialised or even accused of fraud or some benefit extortion.  Sometimes such people may belittle their difficulties in front of themselves, comparing them to those of people with visible disabilities, devaluing their needs, feeling that perhaps their difficulties do not deserve attention. For many people such concerns are only imagined, but in fact many individuals with health issues or disabilities which are not visible at first glance have experienced situations when an existing problem was questioned on the grounds that they ‘looked too good’ for someone with any difficulty.

Such contestation can sometimes occur indirectly, too, for example as a comment about a particular disability made by someone who is unaware that his or her companion has this particular difficulty. A person hiding a mental disorder may, for example, hear critical or stereotypical statements about it in a conversation, which is much less likely to happen to a person with an easily identifiable disability.

The most important is hidden from the eyes

For many people with hidden disabilities, this phrase has taken on a new and special meaning. Their difficulties are often the axis of their life and functioning in different areas as well as the centre of their identity. Such a person must develop an entire system of actions to compensate for differences or deficiencies in order to adjust to the mainstream or cope with his or her life at school, university or work, all the more complicated because of the dynamics of concealing or revealing their difficulties. For example, when a person anticipates that a particular situation will exacerbate his or her symptoms, he or she will try to adapt his or her schedule to be able to both hide the disability (or avoid the situation as much as possible) and cope with its consequences (e.g. fatigue, mental or physical exhaustion, increased pain, etc.). The importance of this ‘health secret’ for the identity of the person concealing it is demonstrated by what many of them say, i.e. that they would like their internal image to be consistent with what is visible on the outside.  

Despite the enormous resources of energy invested to overcome their own limitations or barriers caused by their environment, in fact many people with hidden disabilities are able to become extremely successful. What plays a crucial role in it is whether or not they can obtain some form of support.

Support

Due to the nature of the difficulties in question, people with invisible disabilities seldom seek formal support in an open manner. Regardless of their decision to do so, studies carried out at an Australian university have confirmed that informal support networks made of acquaintances/friends at or outside university as well as family support are the most helpful for students in such a situation. In addition, having a trusted person around, whether at university or at work, can create opportunities for such individuals to receive specific, tailored support primarily through the ability to safely and openly discuss obstacles that arise. When it comes to students with hidden disabilities, supportive and open university teachers may also significantly improve their functioning at the university.

‘Seeing is believing’, which makes people assume a priori that another person does not have a disability unless it can be seen or measured in some way, is a phenomenon affecting a large number of people experiencing hidden disabilities on a daily basis.  Raising people’s awareness in this area can help not only those around us who may be facing this kind of problems, as it can also become our reality at any point in our lives because we are all aware that health is a very precious and yet particularly fragile quality.

Reference literature

Bajorek, M., Kozaczyńska K. (2020). Niepełnosprawność ukryta. Wprost o reumatologii, 2, 12-14.

Couzens, D., Poed, S., Kataoka, M., Brandon, A., Hartley, J., Keen, D. (2015). Support for Students with Hidden Disabilities in Universities: A Case Study. International Journal of Disability, Development and Education, 62(1), 24-41.

Fitzgerald, M. H. (2001). "You Look So Well": The Multiple Facets of Hidden Disabilities. Disability Studies Quarterly, 20(3), 254-258.

Racław, M., Szawarska, D. (2018). Ukryte/niewidoczne niepełnosprawności a polityka tożsamości i etykietowania w życiu codziennym. Przegląd Socjologii Jakościowej, 14(3), 30-46.

About the author

Anna Kwaśniewska, MA, educational advisor at the Jagiellonian University Disability Support Service.