For Allie, a 29-year-old single mother, life has thrown her a lot of curveballs. Her inspiring journey began at the young age of 15, when she developed fibromyalgia. Her fight with chronic illness grew dramatically worse after a bicycle accident. This incident aggravated her moderate symptoms and led her to develop post-concussive syndrome. This event exacerbated her already existing physical ailments. It ignited an ongoing concern of mine—how the healthcare system treats invisible disabilities.
Before the crash, Allie had over a decade of being erased by medical professionals. This repeated rejection wore on her, making her wary and reluctant to ask for assistance. “I had always felt like my symptoms were not taken seriously,” Allie remarked, reflecting on her experiences. Her years-long struggle to obtain appropriate diagnoses left her jaded and wary of seeking care from medical providers after that wreck.
Upon recognizing her new symptoms, Allie understood that she could not return to her original level of health. The adjustment was so radical that it deeply traumatized her. What used to be effortless daily tasks turned into a careful science of pacing and premeditation. She’s always assessing the work she’s willing to put into recovering. As she simultaneously works to take care of her conditions, she works to take care of her children.
Allie’s chronic illness is invisible to most of the people in her life. Millions of other Australians are in the same boat, physically living with those inequities daily impacting their health and wellbeing. Allie and many others like her are impacted by these invisibility ailments, which can cause immense loneliness and anger. “It’s hard for others to understand what you are going through when they can’t see it,” she stated.
To manage her condition and remain an active member of her household, Allie has learned to think outside the box. She’s created visually quiet ways to keep her house occupied and engaged while saving her physical energy for the times that really count. These adaptations help her be present as a mother, even as she continues to fight for her health.
Allie’s story is not just her story — it’s the story of so many others who have called with nowhere else to turn. The increase in visibility for visible illnesses has led to necessary conversations. Among these are the questions of how the healthcare and public health systems can improve their diagnosis and treatment strategies. Advocates say patients like Allie could benefit from a more holistic approach to care to make sure their needs are heard and addressed.
Allie’s story will be featured in a special episode of Insight entitled “Invisible Illness,” airing December 5. In this episode, she describes her own challenges and experiences with a broader audience. This platform helps to highlight the important stories of those living with chronic conditions. It brilliantly argues for the defining importance of knowledge and compassion in what has become a technocratic healthcare system.
As we take steps to improve support for those with less visible disabilities, Allie’s story serves as a reminder that change must first encompass the system itself. The healthcare community has a rare, critical opportunity. It is better able to understand and address the realities and nuances of chronic diseases that do not fit neatly into siloed categories.
