Many people live every day with illness that cannot be seen by others. Often times, those people feel judged and misunderstood, or ashamed of behaviours or impairments that are linked to their condition. Many chronic diseases have no outward signs that alert others to the challenges that individuals are facing. People living with these hidden conditions often don’t disclose the extent of their hardship for fear of being treated differently, stigmatised or disbelieved.
This article is intended to raise awareness of invisible illness and hidden disability. Hopefully readers will pause before they pass judgement about that person using the disabled toilet or car space who “looks perfectly fine”, or that friend who consistently declines social invitations, or that work colleague who takes a lot of time off and is often referred to behind their back as lazy or “bludging“.
My understanding of invisible illness was very superficial until someone special came into my life. He lives with not just one, but a number of invisible illnesses. When disease states are layered, the compounding effects can make life very difficult. Not only can daily activities present challenges, overcoming the stigma associated with not working, receiving welfare benefits, being unable to attend to home maintenance or self-care to a standard you personally regard acceptable can be added stressors that detract from your daily sense of well-being and feelings of self-worth.
Not long after my introduction to the reality of living with invisible illness, I began working with other people living with multiple hidden disabilities: acquired brain injury + chronic pain + chronic depression; bipolar disorder + autism; fibromyalgia + anxiety + hypothyroidism; dissociative disorder + Ehlers-Danlos Syndrome; Attention Deficit Hyperactivity Disorder + Complex Post Traumatic Stress Disorder. I learnt first hand about the complexity of multiple diseases and the additional burden when these are invisible. I came to admire the resilience and tenacity of these individuals. I also felt despair at their frequent self-deprecating comments and apologies for being tired, tardy, inattentive, listless, distracted, or basically, ‘less than they should be’ / ‘not good enough’. This is consistent with the concept of disability shame (and here), and heartbreaking for those who seek to create inclusive societies where difference is valued.
Personal testimonies can really speak to the heart of a matter, so I have included this link which connects you to accounts by women living with a variety of hidden illnesses, and this link to an article about navigating disclosure of invisible illness in new relationships.
Thankfully now, in our connected world, there are self-help and support groups to be found online, where people living with chronic disease and those who care for them can share their experiences and learn new and different ways of addressing various challenges. For example: The Mighty is a site specifically created to be a supportive space for people with health issues and their loved ones; Sleep Disorders Australia offers information, members’ newsletter and a Facebook Support Group; Epilepsy Australia provides information and research findings, as well as links to local and international epilepsy advocacy organisations: the American Arthritis Foundation hosts a page where sufferers can share their stories; Endoactive is a community Facebook page that shares videos raising awareness of Endometriosis. If you or someone in your life is living with an invisible illness or hidden disability, it can help to seek out some support and information.
Similarly we are so lucky now to have instant access to informative video presentations about topics relevant to us. The video below is about Post-Traumatic Stress Disorder, or PTSD, an invisible illness that has come to prominence in the last few decades since being officially recognised in 1980. Essentially an anxiety disorder, as war and environmental catastrophes in the world increase, so too are rates of PTSD expected to rise. This video gives an insight into the basic mechanisms that cause people to experience this disorder.
Complex PTSD is the result of repeated or prolonged trauma, usually experienced in childhood. As the following video shows, childhood trauma is a public health issue, leading itself to many illnesses, both visible and invisible.