Living with autoimmune disease

Living with an autoimmune disease presents unique challenges that can affect various aspects of daily life, including employment.

Understanding these conditions, recognising their symptoms, and implementing effective coping strategies are crucial steps toward leading a fulfilling life.

This comprehensive guide explores autoimmune diseases, their signs and symptoms, coping mechanisms, employment considerations, workplace management, support systems, and available resources.

What is an autoimmune disease?

An autoimmune disease occurs when the body's immune system mistakenly attacks its own tissues, perceiving them as foreign invaders.

This misdirected response can lead to inflammation, tissue damage, and impaired function of affected organs.

There are over 100 known autoimmune diseases, each with distinct characteristics, but they all share the common feature of an overactive immune response.

Common autoimmune diseases include:

• Rheumatoid arthritis (RA) – A chronic inflammatory disorder affecting the joints, leading to pain, swelling, and reduced mobility. Over time, it can cause joint deformities and limit movement, making daily tasks more difficult.
• Lupus (SLE) – A systemic autoimmune disease that impacts multiple organs, including the skin, kidneys, and heart. Symptoms can range from fatigue and joint pain to severe organ damage, making early diagnosis crucial.
• Multiple sclerosis (MS) – A neurological condition in which the immune system attacks the protective covering of nerves, disrupting communication between the brain and the body. This can result in muscle weakness, balance issues, and cognitive difficulties.
• Type 1 diabetes – An autoimmune condition where the immune system destroys insulin-producing cells in the pancreas. Without insulin, the body cannot regulate blood sugar levels properly, requiring lifelong management with insulin therapy.
• Crohn’s disease and ulcerative colitis – Inflammatory bowel diseases that cause chronic inflammation in the digestive tract, leading to severe gastrointestinal symptoms such as abdominal pain, diarrhoea, and malnutrition.
• Psoriasis and psoriatic arthritis – These conditions affect the skin and joints, causing painful, scaly lesions and stiffness. Psoriatic arthritis can lead to permanent joint damage if left untreated.

While each of these conditions manifests differently, they all require long-term management to reduce symptoms and maintain quality of life.

Signs and symptoms of autoimmune diseases

Autoimmune diseases present a wide range of symptoms that vary depending on the specific condition.

Some individuals may experience mild symptoms, while others may face severe, life-altering challenges. Common signs include:

• Fatigue: Persistent and unexplained tiredness is one of the most frequently reported symptoms. Many people living with autoimmune conditions struggle with extreme exhaustion, even after rest.
• Joint pain and swelling: Conditions like rheumatoid arthritis cause inflammation in the joints, leading to pain, stiffness, and difficulty with movement.
• Muscle weakness and pain: Generalised muscle pain or weakness is common, especially in diseases like multiple sclerosis and lupus.
• Skin issues: Rashes, lesions, or discolouration may appear on the skin, as seen in psoriasis and lupus.
• Digestive problems: Conditions such as Crohn’s disease and ulcerative colitis cause severe abdominal pain, diarrhoea, and weight loss.
• Recurring fevers: Frequent, unexplained fevers may indicate an underlying autoimmune response.
• Swollen glands:Enlarged or swollen lymph nodes may develop due to ongoing immune system activity.
• Numbness or tingling: Neurological conditions like multiple sclerosis can cause sensory disturbances.

It’s important to recognise that symptoms can fluctuate, with periods of remission and flare-ups. If you experience persistent or unexplained symptoms, consult a doctor for evaluation and diagnosis.

Strategies for coping with an autoimmune disease in daily life

Managing an autoimmune disease requires a combination of medical treatment, lifestyle adjustments, and emotional support. 

Here are some effective strategies to cope with these conditions in daily life:

1. Medical management

Working closely with healthcare providers is essential for managing autoimmune diseases effectively. Treatment options may include:

• Medications: Anti-inflammatory drugs, corticosteroids, immunosuppressants, and biologic therapies help control the immune response and reduce symptoms.
• Regular check-ups: Routine medical appointments allow for ongoing monitoring and adjustments to treatment plans.
• Specialist care: Seeing a rheumatologist, endocrinologist, or gastroenterologist can provide specialised treatment tailored to specific autoimmune diseases.
• Patient education: Understanding your condition and treatment options empowers individuals to make informed healthcare decisions.
• Keeping a symptom diary: Tracking symptoms can help identify triggers and assist doctors in adjusting treatments.

2. Diet and nutrition

A well-balanced diet plays a crucial role in managing inflammation and supporting overall health. Consider incorporating:

• Anti-inflammatory foods: Fruits, vegetables, whole grains, lean proteins, and healthy fats can help reduce inflammation. Some people find the Autoimmune Protocol Diet (AIP) helpful in managing their symptoms, but this must be done via direction from your doctor.
• Eliminating trigger foods: Some individuals find relief by avoiding processed foods, dairy, gluten, or sugar. Keeping a food journal can help pinpoint specific triggers.
• Hydration: Drinking plenty of water supports overall wellbeing and helps flush toxins from the body.
• Nutritional supplements: Vitamins and minerals such as vitamin D, omega-3 fatty acids, and probiotics may support immune function and digestive health.
• Meal planning: Preparing meals in advance can make it easier to maintain a healthy diet, even on difficult days.

3. Exercise and physical activity

Maintaining an active lifestyle can improve flexibility, strength, and mental wellbeing. However, it’s important to engage in activities that match your physical abilities:

• Low-impact exercises: Walking, swimming, and yoga can help improve mobility and reduce inflammation without causing joint strain.
• Strength training:Light resistance exercises can help maintain muscle strength and support joint health.
• Stretching and flexibility: Incorporating gentle stretching or tai chi can help prevent stiffness and improve range of motion.
• Listen to your body: Avoid overexertion and take rest days when needed. Adjust workouts based on daily energy levels.
• Seeking professional guidance: Consulting a physical therapist can help tailor an exercise program suited to individual needs.

4. Stress management

Chronic stress can exacerbate autoimmune symptoms, making it essential to find effective coping mechanisms:

• Mindfulness and meditation: Practicing mindfulness helps manage stress and improve emotional resilience.
• Deep breathing exercises: Simple breathing techniques can help regulate the nervous system.
• Engaging hobbies: Participating in enjoyable activities, such as painting or reading, can provide mental relaxation.
• Counselling or support groups: Talking to a therapist or joining a support group can provide emotional support and coping strategies.
• Time management: Prioritising tasks and setting realistic goals can help prevent stress and burnout.

Employment and autoimmune diseases

People living with autoimmune diseases may encounter barriers in the workplace, such as fatigue, physical limitations, and employer misconceptions.

The unpredictability of flare-ups and the need for frequent medical appointments can add to these challenges.

Some employees may experience difficulties with commuting, prolonged standing, or maintaining focus for extended periods.

However, with the right support, individuals can successfully maintain their careers and thrive in the workplace.

Understanding workplace rights

In Australia, the Disability Discrimination Act 1992 protects individuals from discrimination based on health conditions.

This means that employers cannot dismiss, demote, or unfairly treat employees due to their autoimmune disease.

Employers are also required to provide reasonable adjustments to support employees with disabilities, ensuring they have the necessary tools to perform their job effectively. These accommodations may include:

• Flexible work arrangements: Adjusted work hours, remote work options, or reduced workloads can help manage symptoms and balance medical appointments.
• Physical accommodations: Ergonomic chairs, standing desks, adaptive keyboards, and assistive technologies can improve workplace accessibility and comfort.
• Leave policies: Paid sick leave, medical leave, and flexible leave options can provide essential recovery time without jeopardising job security.
• Workplace awareness and training: Encouraging education about autoimmune diseases can help reduce stigma and foster a more supportive work environment.
• Access to workplace wellness programs: Some employers offer employee assistance programs (EAPs) that provide mental health support, stress management workshops, and wellbeing resources.

Understanding these rights can empower employees to advocate for their needs and ensure they receive the appropriate accommodations to succeed in their professional lives.

Choosing the right job

Finding the right job is crucial for individuals living with autoimmune diseases, as managing symptoms while maintaining employment can be challenging.

The ideal roles often offer flexibility, the ability to work remotely, or low physical demands.

When choosing a career, it is important to consider factors such as the predictability of workload, accessibility of the workplace, and employer support for health-related needs.

Certain careers may be more suitable for individuals with autoimmune diseases due to their adaptability and work-life balance opportunities. Job ideas include:

• Freelance writing and editing: Offers the ability to work from home with flexible hours, which can help manage fatigue and flare-ups. This role requires strong writing and communication skills but allows for breaks and self-paced work.
• Graphic design: A creative profession that primarily involves working on a computer, making it suitable for individuals with mobility restrictions. Many graphic designers have the option to freelance or work remotely.
• Counselling and social work: These professions provide fulfilling work that can often be done part-time or on a flexible schedule. Roles in mental health support, career counselling, or social work allow for meaningful engagement while accommodating health needs.
• Remote administrative work: Jobs such as data entry, customer service, transcription, and virtual assistant roles enable individuals to work from home, reducing the need for commuting and providing more control over their environment.
• Education and tutoring: Teaching, whether online or in person, can be an excellent option with flexible schedules. Tutoring allows individuals to manage their workload while still engaging in rewarding work.
• Research and data analysis: Academic or market research roles involve working with data, reports, and findings, often allowing for remote work and a structured work schedule that can accommodate medical appointments.
• IT and software development: Careers in technology, such as programming, web development, and cybersecurity, are often remote-friendly and allow for structured work with minimal physical exertion.
• Health coaching and nutrition consulting: If interested in wellness, individuals with autoimmune diseases can become certified health coaches or nutrition consultants, guiding others in managing their health while setting their own work schedule.

By selecting roles that align with personal abilities and limitations, individuals with autoimmune diseases can pursue meaningful careers without compromising their health.

Additionally, discussing workplace accommodations with employers can help create an environment that fosters success and wellbeing.

How to manage autoimmune disease in your workplace

Living with an autoimmune disease while working requires careful planning and proactive management.

Employees can take steps to balance their health needs with workplace responsibilities, ensuring they remain productive without compromising their wellbeing.

Disclose selectively

Deciding whether to disclose your autoimmune condition at work is a personal choice. Consider the following factors before discussing it with your employer or colleagues:

• Workplace culture: If your workplace fosters an open and supportive environment, disclosure may lead to better accommodations and understanding from your team.
• Necessity for adjustments: If you require flexible working arrangements, modified tasks, or additional support, informing your employer may be beneficial.
• Confidentiality and boundaries: You are not obligated to share specific medical details. If you choose to disclose, you can simply explain that you have a health condition that occasionally affects your work and may require accommodations.
• Legal protections: Under Australian law, employers cannot discriminate against employees based on their disability and/or health conditions. If you face barriers or resistance after disclosing, you may have legal options for support.

Use assistive devices and ergonomic tools

Ergonomic tools and assistive technology can make a significant difference in comfort and productivity, especially for individuals living with joint pain, muscle weakness, or fatigue. Consider:

• Ergonomic chairs and desks to reduce strain on the back, neck, and joints.
• Voice recognition software to limit the need for extensive typing if you experience hand or wrist pain.
• Keyboard and mouse alternatives designed to ease strain on fingers and wrists.
• Screen magnifiers or anti-glare filters if you experience vision-related challenges due to your condition.
• Support braces or compression gloves to reduce joint pain while performing repetitive tasks.

If your employer does not already provide ergonomic equipment, you can request reasonable workplace modifications.

Take scheduled breaks to manage fatigue

Many autoimmune diseases cause unpredictable fatigue that can make it difficult to sustain energy levels throughout the workday.

Regular breaks can help you recharge and maintain focus. Consider:

• Short, frequent breaks rather than long ones to prevent exhaustion from building up.
• Stretching or movement breaks to improve circulation and reduce stiffness.
• Hydration and nutrition breaks to maintain energy levels and avoid crashes.
• Mindfulness or breathing exercises to manage stress during the workday.

If necessary, speak with your employer about structuring your workload to allow for natural breaks throughout the day.

Prioritise self-care to prevent burnout

Balancing work with a chronic health condition requires intentional self-care to avoid burnout. Key strategies include:

• Setting boundaries: Avoid overcommitting to extra projects if it impacts your health.
• Getting sufficient sleep: Proper rest helps manage symptoms and improve focus.
• Engaging in stress management activities: Yoga, meditation, or hobbies can help reduce workplace stress.
• Planning recovery time: If you anticipate a flare-up, schedule time off or reduce workload where possible.
• Communicating with your employer: If you need workplace accommodations, having open conversations with your employer can ensure you get the support you need.

By taking these proactive steps, employees living with autoimmune diseases can protect their health while continuing to contribute effectively in the workplace.

How to support someone living with an autoimmune disease

Support from employers, colleagues, and loved ones plays a crucial role in the wellbeing of individuals living with an autoimmune disease.

Small actions can make a significant impact, helping to create a more inclusive and understanding environment at work and at home.

Educating themselves to foster empathy and inclusivity

One of the most effective ways to support someone with an autoimmune disease is to take the time to learn about their condition.

Since autoimmune diseases vary widely in symptoms and severity, gaining a better understanding of these conditions can help dispel misconceptions and reduce stigma.

• Research common autoimmune diseases – Reading about conditions like rheumatoid arthritis, lupus, multiple sclerosis, and Crohn’s disease can provide insight into the daily challenges individuals face.
• Ask questions respectfully – If someone is comfortable discussing their condition, ask how it affects them rather than making assumptions. Every person experiences their condition differently.
• Understand the unpredictability of symptoms – Many autoimmune diseases have ‘good days’ and ‘bad days’, with flare-ups occurring unexpectedly. It’s important to be patient and flexible.
• Avoid dismissive comments – Phrases like ‘You don’t look sick’ or ‘Just push through it’ can be invalidating. Instead, acknowledge their experience and offer support.

By educating themselves, employers, colleagues, and loved ones can contribute to a more compassionate and accommodating environment.

Offering flexibility in the workplace and daily life

For individuals with autoimmune diseases, rigid schedules and work demands can be challenging, especially when symptoms fluctuate. Offering flexibility can help them maintain their job and overall wellbeing.

• Employers can provide flexible work arrangements – Options such as remote work, modified hours, or job-sharing can help accommodate fatigue, medical appointments, or flare-ups.
• Colleagues can be understanding about workload adjustments – Team members can help by being patient with deadline shifts or offering to collaborate on tasks.
• Loved ones can be adaptable in social plans – Autoimmune diseases can cause unpredictable fatigue, so understanding when someone needs to cancel or reschedule plans is important.

A flexible and understanding approach can significantly improve the quality of life for someone managing a chronic health condition.

Providing emotional support through small, meaningful gestures

Living with an autoimmune disease can be physically and emotionally exhausting. Having a support system that provides encouragement and empathy can make a significant difference.

• Simple check-ins matter – A quick message or conversation asking how someone is doing can show you care.
• Listen without judgment – Sometimes, people with chronic illnesses need to vent or share frustrations without being given advice.
• Offer practical support – In the workplace, this could mean helping with physically demanding tasks. In daily life, it could mean offering a ride to a doctor’s appointment or preparing a meal during a difficult time.
• Celebrate their strengths – Acknowledge their resilience and achievements, whether it’s a work milestone or simply getting through a tough week.

By offering emotional and practical support, colleagues, employers, and loved ones can help those living with autoimmune diseases feel valued, understood, and empowered.

How APM can help

At APM Employment Services, we support employers and employees in creating inclusive and supportive workplaces for people with autoimmune diseases. We provide expert advice, and through employment programs like Disability Employment Services (DES), we help businesses implement workplace modifications, improve accessibility, and foster a healthier work environment.

If you're an employer looking to better support your team or an employee needing workplace adjustments, APM Employment Services can provide personalised guidance and practical solutions.

Resources and further reading

There are several organisations and resources providing support and information for individuals with autoimmune diseases, including:

• Autoimmune disorders – Better Health Channel
• Arthritis Australia
• Lupus – Health Direct
• Multiple Sclerosis Australia
• Australasian Society Clinical Immunology and Allergy
• Support groups and helplines – Pain Australia
• A-Z autoimmune disease list – Autoimmune Institute

About this article

APM supports people with disability, injury, or a health condition through various programs and services across its businesses, including Disability Employment Services in Australia.

The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.

When discussing disability, APM’s copy style is to use person-first language and the social model of disability in the first instance. Some articles may use identity-first language or refer to the medical model of disability for clarity or to better suit a specific audience.

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