Just Because You Don’t See It, Does Not Mean I Don’t Experience It: Invisible Illness and Disability

You may have a family member, a friend, a work colleague, or a classmate with a condition not immediately noticeable. They have no wheelchair or physical cues to suggest an illness or disability. Welcome to the realm of ‘invisible illness’. The Invisible Disabilities Association provides a definition of ‘invisible illness’ as:

‘…is a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.’

They do not provide a comprehensive list of conditions (there would be so many!), but outline that these conditions often show ‘symptoms as debilitating fatigue, pain, cognitive dysfunctions and mental disorders, as well as hearing and eyesight impairments and more.’

The 2012 Survey of Disability, Ageing and Carers (conducted by the ABS), produced a number of interesting statistics that provide a glimpse into disability overall in Australia. It estimates that 18.5% of our population (4.2 million Australians) have a disability, with a similar percentage for those in Queensland. 3.6% of Queenslander’s aged between 0-64 have a profound or severe disability that requires assistance in everyday activities.

There are many famous faces bringing awareness to the public about these conditions. Sufferers of chronic illness are expressing positive reactions to the premiere of Lady Gaga’s documentary on Netflix. She talks about managing Fibromyalgia, a condition that produces widespread pain all over the body, and how it affects her whilst being a global pop star, and the demands that come with it.

 

Selena Gomez has also been spoken about in the news about her illness, when she shared a picture on Instagram in hospital. The singer suffers from Lupus, an autoimmune disease where the body attacks its own tissues, and required a kidney transplant.

I’m very aware some of my fans had noticed I was laying low for part of the summer and questioning why I wasn’t promoting my new music, which I was extremely proud of. So I found out I needed to get a kidney transplant due to my Lupus and was recovering. It was what I needed to do for my overall health. I honestly look forward to sharing with you, soon my journey through these past several months as I have always wanted to do with you. Until then I want to publicly thank my family and incredible team of doctors for everything they have done for me prior to and post-surgery. And finally, there aren’t words to describe how I can possibly thank my beautiful friend Francia Raisa. She gave me the ultimate gift and sacrifice by donating her kidney to me. I am incredibly blessed. I love you so much sis. Lupus continues to be very misunderstood but progress is being made. For more information regarding Lupus please go to the Lupus Research Alliance website: www.lupusresearch.org/ -by grace through faith

A post shared by Selena Gomez (@selenagomez) on

 

And we must not forget that mental health issues are also a form of invisible illness as well.

Often those suffering from invisible illness will be met by skepticism and judgement by people around them, including primary health care providers. One major example of this is Lyme Disease, which is a bacteria transmitted from the bite of a tick. The symptoms of Lyme disease include sore muscles and joints, headaches, fever, and a distinguishable rash. There is still debate amongst those in the health sector as to whether ‘chronic Lyme Disease’ actually exists or not, and are hesitant to diagnose an individual even if their symptoms continue for a prolonged period of time. The singer Avril Lavigne spoke to Good Morning America a few years back about her problems with her doctors brushing off her symptoms of Lyme Disease, and the anguish it gave her.

 

This is a topic that is becoming more personal to myself as the days go on. I am a 23 year old who will be a QUT graduate in a couple of months, and my mind is thinking to my future careers and maintaining my health. You see, I have a number of invisible illnesses, including Hypothyroidism; severe Sleep Apnoea; Costochondritis (which is likely a symptom of fibromyalgia – I need to visit a Rheumatologist); Factor V Leiden; and good ol’ Anxiety. I take a number of medications for these conditions, as well as sleeping with a CPAP machine at night (like in the image below).

I still function as a productive adult on most days, but there are challenges that come along the way. Right now, my focus is on pain management and having effective systems in place for my brain fog, as I am often forgetting important things. The only physical cues of these conditions are some weight gain, and perhaps my slowed or paused talking. You don’t see the pain, or the fatigue, or the racing thoughts.

Many people with invisible illness still participate in the workforce, but there are adjustment issues that are still present. Opiod abuse and dependence have posed medication access issues for people suffering from chronic pain. In Australia, from the 1st February 2018, any medication containing codeine (which is metabolised into morphine) will require a doctors script to obtain, and be recorded on a register with a drivers licence or photo ID. There are many in the chronic pain community saying that opiod abusers are impacting their access to medications that allow them to function on a day to day basis.

There is also the issue of others around us (including employers) not understanding how invisible illness affects an individual on a daily basis. The law has protections in place for employees suffering from a disability, but for this to apply employees with health issues need to disclose the details to their employer. There are guides to making workplace adjustments for employees who require it, such as a flexible working from home option, or ensuring they take regular breaks.

I am lucky that the area of study I have pursued involves a lot of computer-based work. This means that potentially on a bad pain day, I can take my work somewhere more comfortable or create a more comfortable environment for myself. But this does not mean that everyone understands this, and that is why awareness and support is important.

Invisible Disabilities Week runs from October 15th to 21st each year to educate the public about those disabilities and illness that may not be obvious, but still affect many people on a day to day basis. Reach out to those around you and be a support system for those managing invisible illnesses every day!

 

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