What to do after a diagnosis of chronic illness

Being diagnosed with a chronic physical or mental illness can be an extremely difficult experience. The emotions that come with a diagnosis of an ongoing or long-lasting condition can be distressing, and it can be overwhelming trying to comprehend exactly what this diagnosis means.

But you’re not alone. This guide can help you to figure out what to do and how to find support after you’ve received a diagnosis of a chronic condition.

What is a chronic illness?

A chronic illness is a long-term health condition that has persistent effects on a person’s body and mind. Some of these conditions will affect a person for an extended period of time before being resolved, and other conditions may not have a cure and have lifelong effects. Chronic illnesses can be physical or mental.

Physical chronic illnesses:

• are conditions that cause someone to feel physical effects on their body for an extended period of time

• have symptoms occur for 6 months or more, or are ongoing and likely to worsen over time

• include conditions such as: asthma, arthritis, cancer, diabetes, chronic pain, fibromyalgia, myalgic encephalomyelitis (AKA chronic fatigue syndrome), Crohn’s disease, thyroid conditions, heart disease, and more.

Chronic mental illnesses:

• can be any type of mental health condition (e.g. depression, anxiety, stress disorders) but the consistency and long-lasting nature of the symptoms deem them ‘chronic’ rather than mild or acute

• involve psychiatric symptoms that are lifelong, or last for an extended period of time

• have different windows of time - depending on the diagnosis - that determine whether the mental health condition is acute or chronic (a GP or diagnosing doctor will be able to give you this information).

Both physical and mental chronic illnesses have the ability to drastically affect a person’s life, plans, everyday tasks and activities, as well as affect their participation in school, work, and personal relationships.

Some common reactions

First, know that there’s no ‘normal’ way to react to a diagnosis of a chronic physical or mental illness. Everyone is different, and it’s common to feel a wide range of strong emotions, including:

• stress

• grief

• anger

• fear

• depression

• anxiety

• shock or disbelief

• loneliness

• guilt or blame

• feelings of loss of control

• feelings of helplessness or hopelessness.

You’re not alone

It can feel very lonely when you receive a diagnosis of a chronic physical or mental illness, and can sometimes feel like no one else understands. But you’re not alone in this and you don't have to go through it by yourself.

There are people you can talk to about how you’re feeling, and there’s lots of people who have been through something similar that you can reach out to.

There are also support lines you can call and a variety of online support groups. Take a look at the Finding support through community section further down for more information.

Tips and management strategies

Take your time and acknowledge how you feel

Take the time you need to process the news. A diagnosis of a chronic condition is a big deal, and it’s 100 per cent okay to need some time to get your head around it.

Acknowledging your feelings and emotions during this time is a positive thing to do, and will help you to process it all in a useful way.

Take some time to think about ways you can work through how you’re feeling: perhaps put your feelings in writing, or talk to someone you trust. It could also be helpful to read about How to cope when things feel out of your control.

If you’re having a tough time with this news, sometimes ‘soldiering on’ and doing everyday tasks can be difficult, or even impossible. That’s okay, and a pretty common reaction – but it’s a good idea to find some support while you’re feeling this way -- see the How can I find support? section further down the page.

It’s okay to grieve

It's common to experience a ‘grieving’ process of sorts after receiving a diagnosis of a chronic or mental illness. An illness like this can disrupt your life and your plans in a major way, so it’s okay to feel like you’re mourning.

It can be helpful to read about the common experience of non-linear grief that often accompanies a diagnosis or lived experience of a chronic physical or mental illness. You can also read about other people’s experiences of grief associated with chronic illness on The Mighty, or check out the ReachOut Online Community.

Educate yourself

It’s a good idea to do some research on the condition you’ve been diagnosed with, as well as treatments, medications, and personal management strategies and self-care techniques.

Your first port of call for learning about your condition should be your GP, or the doctor that gave you your diagnosis. They’ll be able to answer any questions you may have about your diagnosis, as well as give you professional recommendations for treatments and medication. They may also be able to direct you towards trusted online sources to learn about the condition and its symptoms, as well as the best forms of personal management strategies for your personal specific situation.

Arming yourself with information from trusted sources means you’ll be equipped to make positive decisions about your health and how to manage your condition in your everyday life.

However, some people find it a little overwhelming to delve into research straight away. Take the time you need first, then do this once you're feeling ready.

Make an action plan

While receiving a chronic illness diagnosis can sometimes feel like ‘an ending’, it’s a good idea to try to reframe that mindset and think of the diagnosis as the first step of a change in your life. It may not be the change you were expecting or hoping for, but you can still make sure to manage it as best as you can.

One particularly good way to do this is to put together a ‘chronic illness action plan’ – basically, a game plan of how you want to try managing your diagnosis. This can help you to How to cope when things feel out of your control of what’s happening, and to see that there is a plan in place for moving forward.

This plan will look different for everyone, as it depends on your diagnosis and your needs. It could include:

• a task list of everything you need to do each day to manage both your physical and mental symptoms

• a calendar with your appointments

• an outline of your medication schedule

• a list of things that can help if you are experiencing a flare-up, or stronger symptoms of your chronic illness than usual

• a list of the doctors or specialists you want or need to see.

A diagnosis like this can also mean you have to process a lot of new information at once, so writing it out means it’s all in one place, rather than trying to keep it all in your head.

While you’re getting into a routine of new appointments, treatments, management techniques or medications, you can refer back to your action plan for reassurance that you’ve done everything you need to do each day, and see what’s ahead.

Practise self-care

Self-care isn’t just about doing enjoyable or relaxing activities that help you to feel calm; it’s also about taking a proactive approach to looking after yourself on a day-to-day basis to maintain your physical and mental health.

Self-care can look very different for people with chronic and mental illnesses. While it can look like meditation and long baths (which are definitely valid self-care methods in their own right!), self-care can also be making sure you take your medication, or learning to set boundaries in order to balance work and your health.

It’s important to find doable acts of self-care in your everyday life. The Health Sessions has a helpful guide for people with chronic illness on how to practise all forms of self-care and how to integrate them into your everyday life.

How can I find support?

It’s important to make sure you have a good support network after you’ve received a diagnosis. A support network can look different for all of us, but it can include:

• Friends and family: It can sometimes be tough to explain exactly what you’re experiencing, even to your closest loved ones. Mighty Well and CreakyJoints have some good resources on how to have this conversation, and resources you can share with them so they can learn how best to support you.

• Health professionals: Have a chat with your diagnosing doctor or GP about what other health professionals might be able to support you with your condition, so that you can start to build up a supportive health team for yourself. It can be particularly helpful to ask your GP to identify a mental health professional who specialises in treating people with your condition and ask them to Getting and using a mental health care plan and referral letter for them.

• Your school/university and teachers: While it isn't essential, it can be a good idea to speak to a teacher or school counsellor about your diagnosis. This way, if you find that your symptoms are making school more difficult for you, you can comfortably approach those teachers to discuss if there's any adjustments that could be made in order to help you participate fully in your studies.

Finding support through community

Something wonderful about life with chronic illness is the community that comes with it. The chronic illness community has an enormous presence online and on social media, and has created spaces of support, information, care, empathy and encouragement.

Take a look through the tags, groups and spaces on sites like Facebook, Reddit and Tiktok by searching for ‘chronic illness’ or the name of the condition you’ve been diagnosed with. There will be lots of options, so have a browse through until you find a space that feels right for you.

However, there are many online spaces that promote misinformation, so make sure to be cautious and remember to check that any health information is from a trusted and reliable source. As a general rule of thumb, if health information is from a government site, condition-specific site, support organisation’s site, or in a medical journal, then you can feel comfortable that it’s trustworthy.

You’ll also be able to find plenty of posts about chronic physical and mental illnesses, receiving a diagnosis and other topics on the ReachOut Online Community.

Phone services

If you’re having a tough time or need to speak to someone right away, you can do this via Kids Helpline (1800 55 1800), beyondblue (1300 22 4636), or Lifeline (13 11 14).

You can find more support line details and resources on our Urgent Help page.