Living with a chronic illness

A chronic illness is defined as an illness that is persistent or long lasting. A diagnosis of a chronic illness can be difficult to cope with, and almost certainly means some major changes in your life. But with the right support and education, you can adjust to living with a chronic condition.

This can help if:

• you or someone you know has been diagnosed with a chronic illness

• you want to know more about living with a chronic illness

• you want to better understand the common physical and psychological effects of chronic illness

• you are looking for some strategies for making life with chronic illness a bit easier.

What is a chronic illness?

A chronic illness is any medical condition that lasts a long time. Some chronic illnesses get worse over time, and others come and go over months or years. There are lots of different chronic illnesses, and each has different causes and symptoms.

Common examples of chronic illness

• epilepsy

• asthma

• cystic fibrosis

• cancer

• diabetes

• depression and other mental health issues.

Finding out you have a chronic illness

Being diagnosed with any medical problem can be a shock. When it's a serious illness that you're going to have for a long time, it can be even harder to adjust to. It's normal to feel frustrated or upset.

Depending on the condition, chances are you'll have to make some adjustments to your lifestyle to manage the symptoms.

Common lifestyle changes for those living with a chronic illness

If you have a chronic illness, it’s likely you’ve already been to a lot of doctors and medical professionals for guidance on how to manage your symptoms.

Whatever you’re experiencing, there are some lifestyle changes you can make that can help your body be better able to deal with symptoms:

• Cut down on alcohol and other drugs.

• Research foods and diets that will alleviate your symptoms.

• Learn about exercises that can help.

• Find a GP you feel comfortable with and can trust, who can arrange your specialist appointments and help you keep on top of your symptoms and medications.

While these lifestyle changes might seem simple, they can play an important part in helping you manage chronic pain symptoms effectively.

Understanding your chronic condition

It’s vital to learn about your chronic illness. By getting to know and understand what is happening in your body, you’ll feel more in control and be able to make informed decisions regarding your own care.

• Do research – use credible websites (ones ending in .gov or .org are usually reputable) to learn about what the illness is doing to your body, and how different treatments work.

• Talk to other people with your illness, either face-to-face or via online support groups – you’ll find there’s a lot you can do to support each other!

• Keep a symptoms journal – on your phone or on paper. Recording your chronic illness symptoms not only helps you keep track of how you’re feeling over time, but can also help your doctors understand what life is like for you outside the clinic.

• Don’t be too hard on yourself – adjusting to any life change is hard and takes time. There will be days when you push yourself and feel worse for it, and times you feel low because you’ve missed out on something. Talk to a trusted friend or psychologist if you’re finding the adjustment tough.

Helping others understand your chronic illness

It might feel difficult to talk about your illness with others. Often they won’t understand what it means, why it has happened, or why you can’t do everything you used to do. Who you talk to about your chronic illness is totally up to you. Don’t feel pressured to go into details with people you aren’t comfortable talking to.

How to talk to others about living with a chronic illness

There are a few things you can do to help those around you better understand and offer their support:

• Explain the nature of the illness and describe what it’s doing to your body.

• Tell them what you need from them. If you don’t need anything, be clear about that as well.

• Explain to them what you can and can’t do.

• Consider using spoon theory to communicate how chronic illness impacts day-to-day life.

• Understand that your friends and family have limitations. Sometimes people won’t know how to deal with you being sick. Remember that their inability to understand your illness has to do with their limitations, not yours.

Frequently asked questions about living with a chronic illness

You might still have some questions about living with a chronic illness and these are a few of the more common ones to help you find some answers.

What support services are available for young people with a chronic illness?

There are several support services available for young people with chronic illnesses. For example the Chronic Illness Peer Support which is run by young people for those aged 14-25 yrs old, click here to check if you’re eligible to join them. This healthdirect article also provides a great list of support groups for different chronic conditions. If you’re struggling with your mental and emotional health, which can be a common experience for those living with a chronic illness, seeing a mental health professional can be very helpful. You can also connect with other young people who may be going through similar experiences at ReachOut’s Online Community or book a free call with an experienced peer worker through ReachOut PeerChat.

Does chronic illness count as a disability?

Chronic illness doesn’t always count as a disability so it’s important to seek professional support to understand whether your chronic condition may or may not be eligible for disability support services. If you’d like to learn more in the meantime, this article at The Conversation dives deeper into the difference between chronic conditions and disability.

Can chronic illness be cured?

It really depends on what your chronic illness is and everyone’s experience will be different however most chronic illnesses are not cured completely and require long term management. The best thing you can do is talk to a health professional you trust to understand what treatment and management options are available for you.

Are mental health conditions considered chronic illnesses?

Mental health conditions can sometimes be considered a chronic illness if they are long-term, won’t get better on their own or can’t be resolved completely. Depression and bipolar disorder are some examples of mental health conditions that are considered to be chronic, however, it’s important to understand that not all episodes of depression will be chronic.

How can I support someone with a chronic illness?

If you’re supporting someone who lives with a chronic illness, it can be hard to know how to help. Here are some tips to try:

• Listen to them and be there for them.

• Learn more about their chronic illness so you don’t have to rely on them to educate you.

• Ask them how they want to be supported instead of making any assumptions.

• Offer to help them with tasks, errands, problem solving or attend appointments.

• Remember to look after yourself, too.

• Get more support and help when you need to.

Living with a chronic illness will look different for each person but there can be shared experiences. Finding and connecting with people and communities that can support you during the best and worst days helps lighten the load. 

If you need to talk to someone right now, there are free support lines such as Kids Helpline (1800 55 1800), beyondblue (1300 22 4636 or chat online) and Lifeline (13 11 14 or chat online).