A chronic illness is a long-term condition that may or may not be life threatening. It is common for it to:
- need ongoing treatment and management
- not get better on its own
- affect your day to day life
Common chronic illnesses include:
- heart disease
- autoimmune disease
- back pain
- lung diseases like bronchitis and emphysema
- kidney disease
- mental health conditions
Seeing a doctor and getting a diagnosis
Not all chronic illnesses are easy to diagnose.
You may need to see more than one doctor or specialist before you have an answer.
A chronic illness requires ongoing care to help you treat and manage your condition.
It’s important to find a doctor or health care team you trust and feel comfortable with who can:
- identify your health care needs
- talk about treatment options
- help you create a chronic disease management plan
If your child has a chronic illness
If your child has a chronic illness, talk to their school for help:
- developing a health support plan
- applying for programs
- applying for financial help
- making modifications and adjustments at school
Having a child with a chronic illness will normally bring changes for the whole family. You can get help at:
- Carers NSW Australia - services and support for people with chronic illness or disability, and their carers
- Variety children’s charity - financial and emotional support for children and their families affected by illness and disability
- Raisingchildren.net.au - peer support groups and resources for teens with chronic illness
- Livewire - online community support for teens affected by chronic illness
When an illness is considered a disability
Disability is distinct from chronic illness. A disability is an ongoing condition that has lasted (or will likely last) at least 6 months and restricts everyday activities.
Disability can take many forms, and can be caused by:
- genetic disorders
An illness doesn't need to be permanent to be considered a disability.
If you have a dust disease
Dust diseases can be diagnosed through medical tests. Contact your doctor if you think you’ve been exposed to harmful dust.
Dust disease is a lung illness caused by inhaling harmful dust particles. It's most commonly caused by exposure to dust in the workplace, such as at building and construction sites.
The most common cause of dust disease is asbestos dust.
The symptoms of dust disease
The symptoms of dust disease are similar to other respiratory illnesses, and includes:
- chronic cough
- shortness of breath
- mucus in the airways
- chest pain
A dust disease can appear years after exposure. It can cause thickening or scarring of lung tissue, and in some cases, lung cancer.
You may be eligible for compensation and help with medical costs if you have a dust disease, depending on how and where you were exposed.
Current and retired NSW workers with a dust disease can also make a claim for no-fault workers’ compensation payments through icare Dust Diseases Care.
Taking leave and changing work
You don't have to tell your workplace if you have a chronic illness. However, you may want to let them know if it will affect your ability to do your job.
Think about talking to your work if you're likely to need a lot of time off for:
- sick leave
- medical appointments
Even if you do tell your work about your illness, you still have a right to privacy. They can't share this information without your consent.
Your rights at work
You're protected from losing your job if taking time off work because of illness if you've:
- been away less than 3 months in a row (or less than 3 months over a 12-month period)
- taken paid or unpaid leave, or a combination of both
- provided proof of your illness, such as a medical certificate
You may not be protected if you've taken more than 3 months off work, even if you have proof of your illness.
Some chronic illnesses are considered a disability under the Commonwealth Disability Discrimination Act. This can include temporary illnesses.
If your illness falls under this definition, your employer must make reasonable adjustments so you can keep working. This can include:
- adjustable work stations
- access to car parks, lifts and ramps
- building modifications
- flexible work hours
Flexible work arrangements
If your illness is making it difficult to work, you can ask for a flexible work arrangement.
You can do this even if your illness isn’t considered a disability under the Commonwealth Disability Discrimination Act.
A flexible work arrangement can include:
- working part time
- working from home
- flexible work hours
- job sharing
Leave and notice
You may need to take a lot of time off work if you have a chronic illness. There are paid and unpaid leave options, depending on your situation.
Most full and part time workers get paid sick leave when they're too sick to work.
If you don't get paid sick leave or have used it all, you may be able to take unpaid leave. Talk to your work about your options.
If you're too sick to work, let your workplace know as soon as possible. They can ask for a medical certificate from your doctor as proof of your illness.
Getting help with costs
Having a chronic illness can mean paying more for health care, medication and changes to your home.
You may also have less money coming in if you need to reduce your work hours or stop working.
There are different types of financial help available from the government, including:
- Sickness Allowance
- National Disability Insurance Scheme (NDIS)
- Disability Support Pension
- Child Disability Assistance Payment
- Mobility Allowance
- Pensioner Education Supplement
- Telephone Allowance
- Rent Assistance
If you're a veteran, you may be be able to get an income support payment from the Department of Veterans’ Affairs.
Help with medical costs
Medicare covers all or part of the costs of some medical services, including:
- doctor or specialist appointments
- tests and scans
- most surgery and procedures by a doctor
- eye tests by optometrists
Check with your doctor or health provider if they bulk bill. If they do, it means you don't have to pay for the appointment.
If they don’t bulk bill, you can ask in advance:
- how much the appointment will cost
- how much you'll get back from Medicare
Medicare Safety Nets can also help to keep some of your medical costs down. You get back more from Medicare if you spend over a certain amount in a calendar year on:
- doctor or specialist appointments
- some tests and scans
You can get cheaper medicine if:
- it's on the Pharmaceutical Benefits Scheme (PBS). Learn more about the PBS at Services Australia
- you have a concession or health care card. Find out if you can get one at Services Australia
- you spend a certain amount on PBS medicine in a year and reach the PBS Safety Net. Find out more about the PBS Safety Net at Services Australia
Equipment and the cost of running it
You may be able to get help with the cost of buying and running medical equipment.
For aids, equipment and rehabilitation appliances, you can get help:
- from EnableNSW
- for veterans from the Department of Veterans’ Affairs
- for managing incontinence from Services Australia
For the cost of running medical equipment, you can get:
Private health cover
You may be covered for hospital, rehabilitation and medical costs not covered by Medicare if you have private health insurance. You will also usually:
- have shorter waiting periods
- get your choice of doctor
You may want to contact your private health insurance company before having treatment to check if it's covered.
If you've taken out insurance and are diagnosed with a chronic illness, you may be able to access a payment to help cover living costs.
This insurance could be through your superannuation fund or with a separate insurance provider.
The types of insurance available include:
- income protection
- critical illness (also called trauma cover or recovery insurance)
- total and permanent disability
- life insurance, which can be paid out early for those with a terminal illness
Contact your insurance provider to find out if you are covered and how to make a claim.
Access your super early
You can access your super early if you:
- are in severe financial hardship
- have a terminal illness
- are temporarily or permanently incapacitated
- have less than $200 in your super fund, or
- meet compassionate grounds
Help to manage your money
It is common to take a look at your money and budget after finding out you have a chronic illness.
The Financial Information Service at Services Australia can help you understand your financial options.
The Budget Planner at Moneysmart is an online tool that can help you work out:
- what you're spending your money on
- where you might be able to save money
The Financial Rights Legal Centre offers advice and advocacy for people in financial stress.
Living with a chronic illness
Knowing more about your illness will help you make better decisions about your care and treatment. It can help to:
- find a doctor you trust and feel comfortable with
- ask your doctor for a chronic disease management plan to help you manage your illness, and to assist you to access support from other health professionals who can help you
- talk to your doctor about your medication and the possible side effects
- ask your doctor about support groups in your local area
Managing pain is an important part of living with a chronic illness.
This can mean taking prescription or non-prescription pain relief medication, as well as other treatments, including:
- physical therapy
- cognitive behavioural therapy
- stress management techniques
Making changes to your home
Having a chronic illness can mean making changes at home to get the care you need while staying independent.
This can include:
- home modifications
- home-based care
- medical equipment at home
- emergency call systems
If your illness means you can’t use public transport, you may be able to get a Mobility Allowance to help with travel costs
Most public transport in NSW is accessible. This means you can:
- travel with a wheelchair, scooter or other mobility aid on most metro, light rail, train, bus and ferry services
- book an accessible trip on regional trains and coaches
- apply for a permit so your assistance animal can travel free of charge on all forms of public transport
There are locally based community transport services you can use for transport to:
- recreation and shopping areas
- medical and social services
- social contact
Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS)
IPTAAS helps with the cost of travel and accommodation if you need to travel long distances for treatment that is not available locally.
Country Care Link
Country Care Link is a free transfer service for those living in regional or rural NSW who need to come to Sydney for medical appointments or hospital stays.
You can get transfers in Sydney between public transport hubs, medical facilities and where you are staying.
If you've been diagnosed with cancer
After talking with your doctor about options for your health care, it can be helpful to get information and support so you can start to understand and come to terms with the diagnosis.
There are also support resources available to help your friends and family.
Finding out you have a chronic illness can be a stressful and complex time. You may have to cope with:
- physical pain
- physical limitations
- higher health care costs
- changes to your lifestyle
- difficult emotions
After talking with your doctor about options for your health care, it can be helpful to get support so you can start to understand and come to terms with the diagnosis.
There are many types of help available if you have a chronic illness, including physical, emotional and practical.
Help at home
Getting support at home with your daily needs can help you live independently at home.
Types of help include:
- Meals on Wheels delivers nutritious meals to your home, and also offers wellness checks and companionship
- My Aged Care can help with cleaning, preparing meals, home modifications and personal care to older people
- National Disability Insurance Scheme (NDIS) offers home help, personal care and home modifications for people with disability
- Veterans’ Home Care helps veterans with cleaning, washing and ironing, personal care and home modifications
Living with a chronic illness can be isolating. The Red Cross companionship and social support program connects you to your community through:
- in-home visits
- outings to cafes, sporting events and other places of interest
- social phone calls
- taking part in community interest groups
Help at work
Getting support at work can help you to do your job while managing your illness.
The Get Healthy at Work program offers support through:
- an individual healthy lifestyle check, including risk assessment, advice on lifestyle changes and referrals to coaching programs and other health services
- a workplace health program that gives you the tools, resources and support to address a priority health area at your workplace
Priority health areas include:
- mental wellbeing
- healthy eating
- physical activity
- alcohol consumption
Mental health and emotional support
You can talk to your doctor about getting access to mental health support services, including:
- social workers
You may be able to get some of these services for no or low cost.
Support groups can be a useful way to meet and talk to people who are in a similar situation. Support groups can be held in person or online.
To find a support group, ask your doctor, hospital or community health centre.
You can also find information and support at:
- Stroke Foundation
- Asthma Australia
- Arthritis Australia
- Diabetes Australia
- Heart Foundation
- Osteoporosis Australia
- Dementia Australia
- Cancer Institute NSW
- Cancer Council NSW
Other support services
For information, help and support, contact:
- BeyondBlue on 1300 224 636 for help with depression and anxiety
- Kids Helpline on 1800 551 800 for phone and online counselling for young people aged 5 to 25
- Mensline Australia on 1300 789 978 for telephone and online counselling for men
- ReachOut for information and support for young people and their families living with a chronic illness
- Healthdirect for information and resources on coping with grief and loss
Support for students
If you're a student with a chronic illness, there are services and support available to help with your studies.
The Pension Education Supplement is a regular extra payment to help with study costs.
You're eligible to get it if you meet study rules and get certain payments from Services Australia or the Department of Veterans’ Affairs.
If you're eligible for the Pension Education Supplement, you may also be able to get a one-off Education Entry Payment.
Find out about adjustments to teaching, learning and assessment activities in schools at the Education Standards Authority.
Learn about available classroom support and if you qualify for low or no course fees at TAFE NSW.
Support for carers
A carer provides ongoing, unpaid support to a family member, neighbour or friend who needs help because of:
- life limiting illness
- chronic illness
- mental illness, or
Anyone can become a carer, at any time. If you’re a carer of someone with a chronic illness, there are a range of services and payments available.
Financial help for carers
You may be able to get financial help and access to other services if you care for someone with a chronic illness.
You may also be eligible for a health care card if you receive a carer allowance or carer payment.
Mental health and emotional support for carers
- Carers NSW Australia on 1800 242 636 for information, support and referrals. They also offer information and resources for Aboriginal carers
- MyTime supports parents and carers of children with a disability, developmental delay or chronic medical condition
- Walking with Carers NSW booklet for information, resources and support
- Carer Gateway for information and support, including respite care
- Young Carers Network for information and support for carers aged up to 25
- LawAccess NSW is a free government telephone service providing legal information, referrals and advice. You can call Monday to Friday on 1300 888 529
- Fair Work Commission’s Workplace Advice Service offers free legal advice about unfair dismissal, general protections and workplace bullying
- The Financial Rights Legal Centre offers advice and advocacy for people in financial stress
Depending on how serious your illness is, you may want to make future plans about:
- your health care
- if you want to choose an Enduring Guardian or Power of Attorney
- making or updating your will
- if you have kids, who will look after them if you can't