Sensitive Canberra: Your guide to creating a chronic illness inclusive career and workplace
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Working with chronic illness – both visible and invisible – can be challenging, on top of normal career demands.
But what if our workplaces supported spoonies to thrive, not hide, or survive, with a compassionate culture, flexible organisations and accessible spaces?
Just as we can design our homes to be sanctuaries, we can create work environments that enhance wellness and productivity by allowing people with chronic illness to achieve independence, with the sense of structure and confidence that purpose provides.
This article speaks to any form of purpose; not necessarily work or career, but studying, parenting, caregiving, volunteering, or – like me in this season of life – caring for yourself in chronic illness. The approaches shared below apply in all areas of life, such as pacing energy, prioritising tasks, letting go of perfectionism and people pleasing, establishing boundaries, setting realistic expectations and goals, compassion, communication, delegation and asking for help.
Pacing energy
Managing chronic conditions while working is a continuous balancing act. More so than healthier colleagues, we need to maintain self and body awareness, plan tasks around higher energy times of day and incorporate breaks, because energy and cognitive function are resources that must be managed. This skill is known as pacing, a way of reducing flares by avoiding cycles of overdoing it, followed by forced rest.
I lived like this for most of my life, but following diagnosis with Ehlers-Danlos, Mast Cell Activations and Postural Orthostatic Tachycardia Syndromes this year, I’m learning the art of pacing. Chronic illness-specific counselling and connecting with other spoonies have been invaluable, as well as having my incredible husband support me in resting more often than I would like, and still less than I need.
Certain types of work will suit different conditions and at different points in a chronic illness journey. In more challenging seasons, for example, low stress, slow paced, independent, less physical, home-based roles may be more suitable.
Boundaries and expectations
Research is emerging around the impact of nervous system stress, especially chronic stress, on physical health, contributing to an increase in allostatic load, burnout and chronic illness. We are starting to learn that stressful behaviours such as people pleasing, perfectionism, overachieving and an inability to establish boundaries in life and work are part of this picture.
So, developing nervous system regulation, mental, emotional and communication skills, to navigate pressures and boundaries, is an essential part of self-care within a career context. This is a wonderful area to explore with close colleagues, managers, mentors and therapists.
Flexible work and inclusivity
Flexible work arrangements are a necessity for many chronic illness warriors, and an important part of inclusivity, allowing spoonies to function around unpredictable symptoms, attend appointments, and manage energy. This can be the difference between a productive work week and a flare that forces an employee to take sick leave, and the ability to pursue career goals as part of the workforce, or not.
In recent years, work has become more flexible, with part-time, job share, remote and hybrid options, supported by technology that allows more communication and tasks to be undertaken online. This has boosted accessibility across many abilities, including chronic conditions, particularly work from home which removes the physical burden of a commute, and exposure to uncontrolled environments.
With Mast Cell Activation Syndrome, a fragrance-free home can prevent flares. With chronic fatigue, a mid-day nap can make returning to work more sustainable. With compromised immune systems, remote work can prevent exposure to communicable illness and unsuitable temperatures. And with pain-related conditions such as Ehlers-Danlos, being able to move between sitting, standing and lying can prevent escalation.
One list
The mental load of chronic illness (in addition to cognitive symptoms such as brain fog) can make keeping on top of tasks difficult. Creating one list on a single platform has been a game-changer for my productivity, as it allows me to categorise and prioritise tasks around illness.
I choose pen and paper, but your workplace or flow might mean a digital list, or a project management tool suits you. I have a single Google calendar and inbox where I forward and filter different addresses to minimise nervous system stress. Inbox zero might not be achievable, but a daily clear-out is.
Each afternoon, I look over my to-do list, calendar and inbox, to identify my most physically and or mentally demanding tasks – ones that will take the most spoons. I’m a morning person so these must happen after gentle movement and breakfast, and before lunch, with lighter tasks and resting in the afternoon.
Communicating diagnosed needs
Navigating professional conversations around chronic illness with your employer can feel daunting. The decision to disclose your condition is a personal one, and you are not legally obligated to do so unless it affects your ability to perform the requirements of your job. However, communication can open the door to a more supportive and accommodating work life.
When you’re ready to have the conversation, it’s helpful to be prepared, including written confirmation from your medical team with details relevant to your role. This means knowing what you need in terms of specific accommodations, such as flexible hours, ergonomic equipment, a quieter workspace, or the ability to work from home.
When you speak with your employer, frame the conversation around how you can continue to be a valuable employee, not about limitations. For example, “To manage my health and maximise my productivity, I would like to propose a flexible schedule where I work three days per week. Could we discuss how this might work with my role and our team?”
Chronic illness inclusive culture
Creating a supportive and inclusive work culture starts with compassion and education. While we can’t expect colleagues to fully understand what it’s like to live with a chronic illness, we can encourage a level of awareness. This helps reduce stigma and combat common misconceptions such as mistaking fatigue for laziness or brain fog for a lack of focus. A supportive workplace acknowledges that productivity isn’t always linear and that some days are better than others.
Companies can foster this culture by providing training for managers and teams on chronic health conditions to help them understand the diverse and often fluctuating nature of illnesses. It is also important to cultivate an environment where employees feel safe to talk about their health needs without fear of judgment, through confidential conversations with HR and or management.
By focusing on outcomes-based management rather than hours spent at a desk, employers can create a culture of trust and empowerment that benefits everyone.
Human Resources plays a pivotal role in creating chronically illness-inclusive, compassionate, well-being supportive workplaces, from culture through to policy and training. Their understanding of emerging legislation (such as Disability Discrimination Act 1992) and best practices is essential for protecting both the employee and the business.
Career support for spoonies
In Australia we have a range of support for people with disability, injury or health conditions to find and maintain work, and grow their careers. On 1 November 2025, a change is happening in the space as Disability Employment Services transitioning to Inclusive Employment Australia .
This change aims to open work opportunities for more people, by providing increased support, providers, responsiveness and flexibility. Providers such as APM support a wide range of chronic conditions and tailor their services to individual needs, such as job matching, training, interview preparation and employment assistance.
APM writes “Your career goals are important, and there is plenty of support out there to help you reach them. From workplace modifications to specialised training opportunities, there are a range of support options available to eager job seekers who are living with a disability, injury or health condition.”
The goal is to create solutions that benefit employees and employers, fostering a more inclusive, productive, and healthier work environment for everyone.
Air quality awareness
For many with chronic illness, poor air quality and environmental triggers such as personal care products, cleaners, fragrance, mold, and dust can cause flares. Incorporating air filtration and opting for more natural products, both in the workplace and personally, contributes to a more hypoallergenic and fragrance-aware environment and is a powerful demonstration of inclusivity and allyship.
These guidelines or policies aren’t about taking away personal choice, rather creating safer shared space to reflect emerging research and awareness, much like a no smoking.
Hustle to health
Chronic illness inclusivity is part of a larger wave, moving away from extreme hustle culture towards valuing physical and mental health. Adopting a more mindful, sustainable and compassionate approach to purpose and work, listening to your body, communicating, establishing boundaries, seeking support, valuing our unique skills and what we can do, are some of the lessons from spoonie life that everyone can benefit from.
Until next month, we’d love you to share your Sensitive Canberra tips and your inclusive work experiences. Connect with Lisa on Instagram @chronicillness.chic or simplicity.canberra@gmail.com
Disclaimer. These articles don’t include medical advice. Please consult your medical team, or Sensitive Choice (National Asthma Council Australia) for verified allergy-inclusive products.
