How to cope with the pressures of living with chronic illness

Living with a chronic illness can be physically and emotionally challenging. Managing pain, adapting to changes in your abilities and dealing with worries about the future can all take a toll.

It’s important to be gentle with yourself and ask for help when you need it. Learning how to cope with your condition and where to get support can help you feel more confident with managing day-to-day tasks.

Whatever your situation, now is a great time to take steps towards improving your wellbeing and overcoming the challenges. In this guide to coping with a chronic illness, we offer tips for looking after yourself while still doing the things that are meaningful to you.

What is a chronic illness?

A chronic illness is a long term health condition lasting 6 months or longer. Common chronic illnesses in Australia include heart disease, stroke, lung cancer, arthritis, asthma, obesity and depression.

Most chronic illnesses take time to develop and are caused by a complex range of factors. Chronic illnesses tend to last a long time and may lead to other health complications in the future. It’s common for people to live with more than one chronic illness at once.

Coping with a chronic illness

Different types of chronic illnesses come with their own set of symptoms and challenges. Living with a chronic condition can also be a source of stress and anxiety. That’s why looking after your mental health should be an important part of your treatment plan.

Coping with a chronic illness may include learning how to live with the physical effects of your condition, managing your symptoms, dealing with emotions and stress and maintaining a positive self-image.

Adjusting to life with a chronic illness can be challenging, and you may find that your condition impacts your relationships, home life and work life.

It’s important to reach out for help and build a strong support network. Having the right support, services and tools in place can help you feel more confident and in control about your situation.

Here are 8 tips for coping with a chronic illness:

1. Understand your condition

Understanding more about your chronic illness and the different treatment options available can help you feel more in control of the situation.

Ask your doctor and other health professionals about your condition and where you can find more reliable information. They may refer you to specific websites, resources and organisations where you can learn more about coping with your chronic illness.

It’s also important to learn about any medication you might be taking, or any medication that is recommended to you. Find out what the medication is specifically for and whether there are any side effects.

Try keeping a symptoms journal where you write down any symptoms you experienced each day. Having a record of your symptoms over time can help you spot patterns, avoid triggers and better manage your health.

You can also use your journal to record your moods, sleep patterns, stress triggers and any other relevant information. Bring your symptoms journal to your health appointments. This will give your doctor a better picture of your symptoms so they can design a more accurate treatment plan for you.

2. Coordinate your healthcare team

You may need to see a number of different practitioners and health professionals as part of your management plan. For example, you may be seeing your GP, a specialist doctor, a physiotherapist and a psychologist.

Tell any health professional you are working with who else you are seeing and what for. You may want to give them a copy of the names and contact details of your healthcare team. Also, make sure all your healthcare team knows what medication you’re taking.

Sometimes it can be easier if the different individuals in your healthcare team communicate directly with each other. You can give permission to your healthcare team to talk to each other and share information about your health plan. This can save you from repeating information to different people and taking repeat medical tests if you don’t need to.

3. Stay connected

Living with a chronic illness can be an isolating experience. It’s important to stay connected with family members and friends – they can be an important emotional support for you. Having positive social connections can help you feel more supported and improve your mental wellbeing.

If you don’t feel comfortable talking about your condition with your family and friends, consider joining a support group or speaking with a counsellor.

Here are some ways to stay connected:

  • Contact your family and friends regularly – schedule a particular time each week to get in touch or meet up.
  • Join a support group in your area – connect with other people who have a similar experience to you and learn more about living with your condition.
  • Volunteer – a great way to connect with your community, even if you don’t have the capacity to do paid work at the moment.
  • Start a hobby or join a club – doing social activities that you enjoy is a great way to boost your mental wellbeing.
  • Attend exercise classes – join a sports team or go for a walk with a colleague during your lunch break.

4. Make healthy lifestyle changes

Maintaining a healthy lifestyle can help you feel as well as possible, both physically and mentally. To improve your overall well being, look at ways you can eat more nutritious foods, get more physical activity and sleep better.

Simple lifestyle changes include:

  • Eat a healthy, nutritious diet rich in vegetables, wholegrains and proteins such as nuts, seeds, eggs and fish. Avoid foods with lots of sugar, refined grains and sodium. Cut down on alcohol, drugs and caffeine – or avoid them altogether.
  • Do some physical activity everyday, even if it’s small and gentle like a walk around the block. Exercise can help with pain management and improve your mood. Speak to your doctor or physiotherapist about creating a personalised exercise plan.
  • Get enough sleep, and get better quality sleep. Try cutting out caffeine, and avoid using screens before bed. Create a regular bedtime routine and go to bed at the same time everyday. Exercising during the day may also help you sleep better at night.

5. Manage your emotions and mental health

Living with a chronic illness can take a toll on your mental health, and poor mental health can make your physical symptoms worse. If you live with a chronic disease, you're more at risk of developing a mental illness such as anxiety and depression.

Learning how to manage and improve your mental wellbeing is a crucial part of coping with a chronic illness. It’s important to seek support from your friends and family – and ask your doctor about mental health services if you’re finding it hard to cope.

Here are some tips for managing your mental health while living with a chronic illness:

  • Practice stress management techniques like deep breathing, mindfulness and muscle relaxation.
  • Take regular breaks throughout the day, and make time for doing things you enjoy.
  • Stay connected – chronic illness can be an isolating experience. Connecting with your loved ones, joining a support group or getting involved in your community can help you feel more supported.
  • Write down your worries, or talk about them with someone you trust.
  • Talk to a counsellor, psychologist or psychiatrist. They can help you work through emotions or psychological distress you might be experiencing, and give you tools to cope better.
  • Look after your physical health – food, exercise and sleep can all have an impact on your mental health.
  • Reduce your responsibilities and ask for accommodations at work to help you manage your stress levels.

6. Set short term goals

Chronic illness often makes daily life unpredictable, and this can make it hard to make long term plans. Setting achievable, short term goals can help you feel a sense of accomplishment and purpose. It’s also a great way to work towards your longer term goals in manageable steps.

When setting goals, it’s best to make them specific, measurable and time-bound. For example, 'do 30 minutes of movement/exercise today' or 'apply for five jobs this week'.

Keep your goals small and achievable, and be flexible if flare ups or unexpected challenges arise.

If your health has impacted your career goals, speaking with an employment consultant may help you feel more confident moving forward. Get advice from your consultant about how to adjust your plans, find job opportunities that are a good fit for you and access support services in the workplace.

7. Know your rights in the workplace

There are laws in Australia which protect people living with a chronic disease from being discriminated against in the workplace. Understanding your rights and responsibilities as an employee can help you feel more empowered to get the support you need at work.

Important things to know about working with chronic illness:

  • You don't have to tell your employer about your condition, unless it affects your ability to do your job properly.
  • Employers are required to make reasonable adjustments at work to help you do your job safely and properly. For example, allowing you to work from home, providing ergonomic equipment or relocating your work station. If you need changes at work to help you do your job better, you can ask your employer or contact a Disability Employment Services provider.
  • You can take up to 3 months off work because of health reasons (paid or unpaid depending on your entitlements) in a 12 month period.
  • If you feel you've been treated unfairly at work because of your health condition, you can contact the Fair Work Commission.
  • If you can no longer do your job, or are worried about losing your job, support is available. Speak to APM about how we can support you to stay in work or find a job that's a good fit for you.

8. Ask for accommodations at work

Living with a chronic illness may mean you can’t do as much as you used to, or that you need some extra support to manage your responsibilities at work. Even small changes in the workplace can help you manage your condition better while still doing the things that are important to you.

In Australia, employers are required to make reasonable adjustments in the workplace so that employees can do their work safely and properly. They may even be eligible for funding to make reasonable adjustments for you.

Examples of workplace modifications include:

  • Working from home
  • Flexible work schedule or part time hours
  • Time off for health appointments
  • Ergonomic chairs and desks
  • Assistive equipment or technology
  • Relocating your work station, for example closer to toilet facilities

A Disability Employment Services provider like APM can help you ask for adjustments and access workplace support that’s right for you.

Support for coping with a chronic illness

You can get support living and coping with a chronic illness through:

  • Support groups – ask your doctor or search online to find support groups in your area.
  • Your GP and other healthcare professionals
  • Counsellors, psychologists and other mental health services
  • Helplines such as Lifeline or Beyond Blue
  • APM Employment Services

For more information about working and coping with a chronic illness, check out our other guides: