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‘Invisible illness’: The hidden burden of autoimmune disease

Written by Casey Wise | Monday, 10 October 2022


In my last two blog posts, we took a dive into autoimmune disease and some of the underlying factors that cause it, including the important role of the gut in regulating immune function. In this post, I’d like to touch on a frequently overlooked aspect of autoimmune disease, which is the ‘invisible’ nature of many symptoms and how this affects the sufferer.

Imagine waking up in the morning feeling like you haven’t slept, with sharp, stabbing pain and joint stiffness so severe that you can barely get out of bed. You’re so fatigued and brain-foggy that you struggle to make decisions and perform your everyday tasks. On some days you may unexpectedly experience headache, fever, nausea, or diarrhea, all while outwardly looking like a perfectly normal, ‘healthy’ person. “But you don’t look sick?”, family, friends and co-workers respond when you try to explain what you’re experiencing.

This is the reality for thousands of Australians who suffer from autoimmune and other chronic illnesses that exhibit little or no visible symptoms. Even conditions like rheumatoid arthritis, multiple sclerosis, and lupus (which do have physical manifestations), are much more complex than meets the eye. As a result, they often take a long time to diagnose, and may not garner a great deal of support and understanding from others.

Whilst pharmaceuticals and natural medicines can assist in managing pain and slowing disease progression, autoimmune patients often continue to struggle with their diagnosis and what it means for their day-to-day life and functioning. There is a great deal of stress and uncertainty involved in navigating a chronic illness – from dealing with unexpected disease flares and side effects of medications, to the disruption of work and family life, to the financial burden of ongoing visits to doctors and specialists. It can be a demoralising process, and this has real implications for patients’ mental health.

In a 2016 study conducted by researchers at the University of Zurich on patients with systemic lupus erythematosus (SLE), it was found that 50% of the cohort demonstrated impairment of health-related quality of life and depression-like symptoms1. In a similar U.S. based study, it was observed that among patients with systemic autoimmune rheumatic diseases, illness-related uncertainty was correlated with increased depression, anxiety, and sickness impact2.

This data highlights the importance of addressing mental wellbeing when supporting auto-immune patients on their health journey. As holistic practitioners, it’s important to display empathy and compassion, and provide a space of non-judgement for the patient to tell their story. This may be the first time the patient feels heard and validated in this way, which can be a powerful step in their healing. By working collaboratively with the individual, we can create a supportive environment in which they feel empowered to take an active role in their healing and implement positive health changes. And of course, referring on to a psychologist or other mental health professional can be beneficial in helping the patient further develop coping strategies, manage stress, and improve self-care.

Ultimately, it’s important to encourage autoimmune patients not to lose hope. Helping them to realise that their body is not their enemy and that they can take small, sustainable steps to better manage their condition can make all the difference in improving their quality of life.


  1. Pryce, C. R., & Fontana, A. (2016). Depression in autoimmune diseases. Current Topics in Behavioural Neurosciences, 31(1), 139-154.
  2. Wallace, Z. S., Cook, C., Finkelstein-Fox, L., Fu, X., Castelino, F. V., Choi, H. K., Perugino, C., Stone, J. H., Park, E. R., & Hall, D. L. (2022). The association of illness-related uncertainty with mental health in systemic autoimmune rheumatic diseases. The Journal of Rheumatology, 211084.

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Casey Wise

Casey is a practicing Clinical Nutritionist (BHSc Nutritional & Dietetic Medicine) and Endeavour College graduate based in Brisbane, Queensland. Her areas of expertise are autoimmune disease and gut health, and the interconnection between the two.

Casey's journey into nutrition began after being diagnosed with rheumatoid arthritis at just 17 years old and experiencing first-hand the transformative power of adopting a nutritious diet and healing the gut. This, combined with her education and clinical experience, has allowed Casey to develop a holistic and integrative approach to nutrition and cemented her passion for helping others to lead their healthiest, most fulfilling lives.

Read more by Casey Wise