Living with immunodeficiency

Living with immunodeficiency can affect many parts of your life, from your daily routine and relationships to how you work and plan for the future. 

With the right support and information, it’s possible to navigate these challenges and continue living a meaningful and fulfilling life.

Whether you were born with a primary immunodeficiency or acquired one later in life, the right information and support can make a real difference. 

This guide explores what immunodeficiency is, how it can impact you, and strategies to help you live well, including support to find and keep a job that suits your needs.

What is immunodeficiency?

Immunodeficiency refers to a condition where your immune system doesn’t function as it should. This makes it harder for your body to fight infections and recover from illness.

There are two main types:

• Primary immunodeficiency: Primary immunodeficiency is usually inherited and present from birth. There are over 400 recognised types of primary immunodeficiency, affecting how your immune system develops or functions.

• Secondary immunodeficiency: Secondary immunodeficiency develops later in life. It may be caused by other health conditions (like cancer or diabetes), medications (such as chemotherapy or immunosuppressants), infections (like HIV), or malnutrition.

Immunodeficiency is not always visible, and its symptoms can vary widely. For some people, it causes frequent infections. 

For others, it can lead to serious complications, long recovery periods, and extra vulnerability in daily life.

Understanding your type of immunodeficiency and how it affects you is the first step to managing your health and wellbeing.

Signs and symptoms of immunodeficiency

The symptoms of immunodeficiency can look different for everyone. For some people, it may mean ongoing, low-level infections that are difficult to shake, such as frequent colds, sinus infections, or skin irritations. 

Others might experience repeated or severe illnesses that take a significant toll, even when the original cause seems minor. Something as simple as a cold or a small cut can lead to complications, extended recovery times, or hospital visits.

Because the immune system plays such a vital role in protecting the body, immunodeficiency can also affect other areas of health. 

You might feel run down more often, take longer to bounce back after being unwell, or experience inflammation, digestive issues, or fatigue that doesn’t have an obvious cause. 

In some cases, symptoms may be subtle at first and only become noticeable over time. This variability is part of what makes immunodeficiency complex, and why getting the right diagnosis and support is so important.

Common signs and symptoms may include:

• Frequent or recurring infections (e.g. ear, sinus, chest, skin or urinary tract infections)

• Illnesses that are unusually severe or take longer to resolve

• Poor response to antibiotics or medications

• Digestive issues like chronic diarrhoea

• Delayed growth and development (in children)

• Fatigue or low energy

• Autoimmune symptoms (e.g. inflammation, joint pain, or rashes)

• Unexplained fevers or weight loss

Secondary immunodeficiency may also present alongside symptoms from the underlying condition, such as cancer, kidney disease, or HIV. 

These health conditions can weaken the immune system in different ways, either by directly affecting immune cells or through treatments like chemotherapy, radiation, or immunosuppressive medications. 

For example, people undergoing cancer treatment may have reduced white blood cell counts, making them more vulnerable to infections. 

Similarly, individuals living with HIV may experience a gradual decline in immune function over time, particularly if their condition isn’t managed with antiretroviral therapy.

In chronic conditions like kidney disease or diabetes, the immune system can become less responsive or effective due to long-term inflammation or other biological changes. 

As a result, people may face a higher risk of infections, slower healing, or complications from illnesses that others recover from more easily. 

Recognising this connection between underlying health conditions and immune function is key to managing your overall health and working with your care team to reduce risks.

If you’re often unwell or slow to recover, it’s important to speak to a doctor. Early diagnosis and treatment can help reduce complications and improve your quality of life.

Strategies for coping with immunodeficiency in daily life

Living with immunodeficiency can mean adapting your daily routine to manage risks, energy levels, and flare-ups. This might involve planning your day with more flexibility, taking extra steps to avoid infection, or building in time to rest and recover when needed. 

You may need to be more mindful of your surroundings, especially in public places or during times of increased illness in the community. Managing your energy, sometimes referred to as ‘spoon theory’ by people with chronic conditions, can also play a big role in pacing yourself and avoiding burnout.

While it may require extra care and forward planning, many people go on to lead full and active lives with the right strategies in place. With support from your healthcare team, practical routines that suit your lifestyle, and an understanding of your personal limits and strengths, you can continue to do the things that matter most to you. 

Whether it’s spending time with loved ones, working towards career goals, or simply feeling more in control of your health — small, consistent actions can help you live well with immunodeficiency.

Consider the following strategies to help you:

1. Build a care team you trust

Regular support from doctors, immunologists, or other health professionals is key. Your team can help you:

• Manage symptoms or infections

• Monitor your immune function

• Access treatments like immunoglobulin therapy or antivirals

• Adjust medications safely

Having clear communication with your team means you're more likely to feel in control of your health, not just reacting to illness, but planning ahead.

2. Stay up to date with treatments

If you’re eligible, your healthcare provider may recommend specific treatments to support your immune system and reduce the risk of serious illness. These may include:

• Immunoglobulin therapy (IVIG or SCIG): This treatment involves receiving antibodies from donated human plasma to help your body fight off infections. Intravenous immunoglobulin (IVIG) is usually administered through a drip in a clinic or hospital, while subcutaneous immunoglobulin (SCIG) is delivered just under the skin, often at home. 

This therapy can be life-changing for many people with primary immunodeficiency, helping reduce infection frequency and severity.

• Vaccinations: Depending on your specific condition and immune response, your doctor may recommend certain vaccines to help protect you from preventable diseases like influenza or pneumonia. Your healthcare provider will assess the risks and benefits based on your unique needs.
  
  

• Antibiotics or antivirals: These may be prescribed as a preventative measure (called prophylaxis) or to treat infections when they occur. If you’re prone to recurrent bacterial or viral infections, your doctor might suggest regular or standby prescriptions to help you manage flare-ups quickly and effectively.

Sticking to your treatment plan is an important part of staying well with immunodeficiency. This means taking medications as prescribed, attending regular check-ups, and communicating openly with your care team about how you're feeling. 

If you notice side effects or changes in your health, speaking up early can help adjust your plan and avoid complications. Being consistent with your care gives your body the best chance to stay resilient and puts you in the driver’s seat of your own health journey.

3. Practise hygiene and infection control

Taking everyday steps to avoid infections is especially important when you live with immunodeficiency. Because your body may not be able to fight off bacteria, viruses, or other harmful germs as effectively, prevention becomes a key part of staying well. 

Simple hygiene and safety habits can go a long way in reducing your exposure to illness and helping you maintain your independence.

Some practical ways to lower your risk include:

• Washing your hands regularly – especially after using the bathroom, before preparing or eating food, and after being in public spaces. Use soap and water or an alcohol-based hand sanitiser.
  
  

• Avoiding close contact with people who are unwell – such as friends or colleagues with cold or flu symptoms. It’s okay to set boundaries around contact when your immune system needs extra protection.
  
  

• Wearing masks in high-risk areas or during outbreaks – like on public transport, in crowded indoor spaces, or during flu season. This can help filter airborne germs and keep you safer.
  
  

• Keeping your environment clean and well-ventilated – by regularly disinfecting high-touch surfaces and allowing fresh air to circulate at home or work.
  
  

• Cooking food thoroughly and storing it safely – to reduce the risk of foodborne illnesses. Avoid undercooked meats, unpasteurised dairy, or raw eggs unless advised otherwise by your healthcare provider.

These steps are not about living in fear, they’re about protecting your health while still engaging in the activities that matter to you. They can help you feel more confident moving through your day, knowing you’ve taken reasonable precautions. 

Over time, these habits often become second nature, forming a proactive approach to living well with immunodeficiency.

4. Support your immune system with lifestyle habits

While lifestyle changes won’t replace medical treatment, they can play a valuable role in supporting your body’s resilience and overall wellbeing. 

Looking after your health in a holistic way can help you feel stronger, reduce the likelihood of flare-ups, and improve how you cope with daily challenges.

Here are some practical ways to build supportive habits into your routine:

• Eat a balanced diet: Nourishing your body with whole foods, lean proteins, fresh fruits, and a variety of vegetables helps provide the essential vitamins and nutrients your immune system needs to function.  If you’re unsure what’s best for your condition, a dietitian can help you tailor a meal plan that suits your needs and preferences, especially if you also manage digestive symptoms or allergies.

• Stay hydrated: Drinking enough water helps your circulation, supports healthy digestion, and assists in flushing toxins from your body. Even mild dehydration can affect your energy and how well your body regulates temperature, so keep a drink bottle handy throughout the day.

• Rest and recover when you need to: Living with immunodeficiency often means learning to pace yourself. If you push through fatigue too often, you might find yourself more prone to illness or burnout. Listening to your body and taking breaks  (even short ones) can help preserve your energy and prevent flare-ups.

• Prioritise sleep: Quality sleep is essential for your immune system to repair and regenerate. Try to create a calming bedtime routine, reduce screen time before sleep, and aim for consistency with your sleep schedule. Good rest supports both your physical health and your mental wellbeing.

• Move your body in a way that suits your energy and abilities: Gentle movement like walking, stretching, swimming, or yoga can improve circulation, boost your mood, and help you feel more in control of your health. 

What’s most important is finding an activity that feels good for you, not pushing to meet someone else’s standard.

Even small, regular habits can add up to a greater sense of wellbeing over time. Making positive changes doesn’t have to mean overhauling your lifestyle overnight — just taking one step at a time, based on what’s manageable and meaningful for you. 

Every small win contributes to your overall strength and self-confidence.

Employment and immunodeficiency

For many people living with immunodeficiency, work can bring structure, purpose, and independence. But it can also be challenging to find a role that fits your health needs, especially when symptoms fluctuate or infections are unpredictable.

You might face barriers such as:

• Needing time off to recover from illness

• Difficulty with long hours or physical tasks

• Workplace environments that increase your risk of infection

• Worry about disclosing your condition or asking for support

These challenges are valid. But with the right support, it's possible to find meaningful work that fits your life.

Finding work that suits you

When thinking about work, ask yourself:

• What type of tasks feel manageable and rewarding for me?

• Do I need flexibility with hours, location, or physical space?

• What environments support my health and reduce my exposure to illness?

Jobs with remote or hybrid options, regular routines, or adjustable workloads can be a great match. This might include:

• Administrative or desk-based roles

• Digital or creative work (writing, marketing, design)

• Customer service (phone or online)

• Bookkeeping or data entry

• Self-employment or freelancing

If you’re not sure where to start, Inclusive Employment Australia by APM can help. Inclusive Employment Australia is a government-funded program that supports people living with disability, injury, or health conditions to find and keep a job. 

Providers like APM offer personalised, one-on-one support to help you build confidence, explore your options, and connect with inclusive employers.

How to manage immunodeficiency in your workplace

Once you're working, it’s important to have strategies that protect your health and support your success. You don’t have to do this alone, small adjustments can make a big difference.

1. Know your rights

In Australia, you're protected by the Disability Discrimination Act 1992. This means your employer must make reasonable adjustments to help you do your job safely and effectively.

This might include:

• Flexible start and finish times

• Working from home part or full time

• Access to sick leave or medical appointments

• Adjusted duties to avoid exposure to illness

• A cleaner, more ventilated workspace

• An adjusted set-up

You’re not required to share your health condition unless it affects your ability to do your job. But letting your employer know can help you access support and workplace modifications more easily.

2. Plan ahead for flare-ups

Having a flare-up is part of living with immunodeficiency, and they can be unpredictable. Having a plan in place means you’re prepared if you do get sick or need time off. You might:

• Discuss back-up arrangements or workload sharing

• Create a return-to-work plan with HR or your manager

• Keep documentation ready from your healthcare provider

This helps take the pressure off you and your team during tough times, and shows your commitment to staying on track.

3. Make self-care part of your routine

Taking care of yourself at work is just as important as what you do at home. This could mean:

• Taking regular breaks

• Setting up an ergonomic workspace

• Managing stress with mindfulness or movement

• Keeping your workstation clean and well-ventilated

Talk to someone you trust if you're struggling. You don’t have to push through alone — support is available.

How to support someone living with immunodeficiency

If someone in your life has immunodeficiency, small gestures of support can make a big difference. Living with a weakened immune system can be isolating, especially when others don’t fully understand the daily challenges. That’s why empathy and flexibility go a long way.

You don’t need to have all the answers. Just showing you care, respecting their boundaries, and being willing to learn can mean a lot. Whether it’s being patient when plans change, offering help with everyday tasks, or simply checking in, your support helps them feel safer, understood, and less alone.

Be flexible

Immunodeficiency can mean cancelling plans, needing rest, or avoiding crowded places, even at the last minute. Try not to take it personally. Let them know you're there, and that you understand.

Learn about their condition

The more you understand what they’re dealing with, the easier it is to offer meaningful support. Ask questions, do your own research, and follow their lead.

Protect them from illness

If you’re unwell, even with a cold, it’s best to keep your distance. You can also:

• Wash your hands before visits

• Wear a mask if needed

• Let them know ahead of time if you’ve been exposed to illness, so they can make their own decision about seeing you.

These small actions help keep your loved one safe and reduce their stress.

Respect their boundaries

People living with immunodeficiency often have to make tough calls to protect their health. Trust their judgement, even if it doesn’t make sense to you.

Check in

A quick message can mean the world. Ask how they’re feeling. Offer practical help, like groceries, meals, or driving to appointments. Just knowing you care can ease loneliness and boost their morale.

Further reading and resources

You don’t have to face immunodeficiency alone. Here are some helpful places to turn for information and support if you or someone you know is living with immunodeficiency:

• Immune Deficiencies Foundation Australia 

• Healthline – Immunodeficiency Disorders

• ASCIA (Australasian Society of Clinical Immunology and Allergy) 

• Rare Voices Australia 

About this article

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

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.

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.

If you have any questions or feedback about the content of this article, visit our Feedback page to get in touch or email support@apm.net.au