Shock, numbness, anger and fear are all normal reactions to a dust disease diagnosis. Here is what a psychiatrist suggests to help you, and the people close to you, cope.
A diagnosis of mesothelioma or silicosis can turn your life upside down in a single appointment. In the days that follow, you may feel shocked, numb, angry, frightened, or all of these at once. The people closest to you are likely to be struggling too.
In an episode of ADDRI’s Dust Disease Diaries podcast, psychiatrist Professor Ian Hickie, Co-Director of Health and Policy at the University of Sydney’s Brain and Mind Centre, spoke with host James O’Loghlin about the emotional side of a dust disease diagnosis.1 This article draws on that conversation and on research with people living with these diseases. It covers what you might feel, practical ways to cope, and where to find support.
Why You Might Feel Numb at First
There is no right way to react to a serious diagnosis. Prof Hickie explains that some people feel numb or seem to feel nothing at all at first. They have heard the news, but emotionally it has not sunk in yet.
Many people go straight into practical mode. They go home and start paying bills, writing letters or sorting paperwork. This can look strange to others, but it is common. There is often a gap between understanding the news and feeling it, and the emotions can arrive days or weeks later. Some people cope well through early treatment and then feel much more distressed further down the track.
Family members often show their distress first. If you are the person diagnosed and you feel calm while everyone around you is upset, that does not mean something is wrong with you.
A Note for Carers
When someone you love is diagnosed, it is natural to want to jump straight to solutions: the will, the finances, what to tell the children. Prof Hickie suggests that what often matters more in the early days is simply being there. Sitting with the person and listening can help more than a to-do list. This is hard to do when you are distressed yourself, which is why support for carers matters too.
Anger, “Why Me?” and Moving Towards Acceptance
Anger and a sense of injustice are natural, especially when a disease was caused by exposure at work or in the environment. You may find yourself asking why this happened, and who is responsible.
Prof Hickie says that expressing these feelings is healthy, and that the people around you should not try to shut them down. Saying “I am angry” out loud can help you move through it. The risk is getting stuck, where anger and resentment become a daily state that wears you down. Australian research has found that people cope in very different ways, ranging from antagonism to acceptance.2
Some people reach a degree of acceptance more quickly than others. Prof Hickie explains that the sooner you can move from “I wish this had not happened” to “what do I want to do with the time and energy I have?”, the more of your life you can spend living in a way that matters to you. This is not about pretending things are fine. It is about not letting anger take up all the room.
Small Daily Habits That Protect Your Mental Health
When people are unwell, they tend to withdraw indoors, stay out of daylight and see fewer people. Prof Hickie notes that this usually makes coping harder, not easier.
A few small habits can help keep your body clock steady, which supports sleep, energy and mood:
- Get outside in daylight every day, even for a short time.
- Keep regular times for getting up and going to bed.
- Stay as active as you can within your limits. A short walk counts.
- Stay in contact with people, even briefly, rather than cutting yourself off.
If you can no longer do things you used to enjoy, such as running or golf, try to focus on what you can still do.
A UK study of people living with mesothelioma and their carers found that both small and larger actions helped their mental health, including spending more time with family and friends and going on holidays.3
Managing the Practical Load
Legal claims, finances, work, treatment appointments and family decisions can feel overwhelming all at once. Prof Hickie suggests breaking them into smaller pieces. This week, you might talk to the lawyer about one thing. Next week, you might sort out one part of your finances.
He also warns against rushing. In his words, you are “not trying to solve everything before the weekend”. Trying to finalise everything at once can lead to decisions you later regret.
Prof Hickie says people often underrate professional help. Lawyers, financial planners, your treating team and ADDRI’s support nurses are good at this work. Leaning on them is sensible, particularly because decision making is rarely at its best when you are distressed.
Living With Pain
Pain and mood are closely linked. Pain is distressing in itself, and it can drive low mood, poor sleep and anxiety. That makes good pain control an important part of looking after your mental health, not just your body. Being stoic about severe pain does not help.
Keep a Simple Pain Record
Prof Hickie recommends keeping track of your pain so that you and your treating team can see what is working.
Each day, you could note:
- your pain as a score from 0 (no pain) to 10 (the worst pain)
- what you tried and how much it helped
- what you were able to do that day, such as going for a walk
- whether pain woke you or stopped you sleeping.
People respond differently to pain medicines, so pain relief should be tailored to you. Share your record with your doctor or nurse, and tell them if your pain relief is not enough to let you sleep or do the things that matter to you.
Take Someone With You
Prof Hickie advises that you “never go into the health system alone”. People often downplay how much pain affects them. A partner or friend who can say “he has not slept properly for a week” can help your treating team understand what is really happening.
Silicosis: When a Diagnosis Changes Your Work and Identity
Silicosis is often life changing rather than immediately life limiting. For many people, especially tradespeople, it means living with a chronic lung disease and giving up work they have done for years. That can mean losing more than a job. It can affect your sense of who you are and your role in your family as a provider.
Australian research with 547 workers from the engineered stone benchtop industry found that stress levels were higher in people with more breathlessness, in those who were no longer working in the industry, and in those with a past history of anxiety or depression.4 If this sounds like you, you are not alone, and support is available.
Prof Hickie describes two paths people can take. Some get stuck on what they have lost and start to see themselves as a burden. Others, often with time and help, find something new to put their energy into. That might involve retraining or building on skills they already have. He has seen people make a shift they would never have made otherwise and find real satisfaction in it.
Living With Uncertainty
Living with silicosis can bring ongoing worry about the disease getting worse. Prof Hickie points out that focusing constantly on the future can take away from today. He encourages people to ask what they genuinely enjoy and what matters most to them, and to do those things now rather than putting them off. If this feels hard to talk about with family, a counsellor or support nurse can help.
The Silicosis Support Hub is a resource that provides clear information and support for people with silicosis and their families.
Talking to Children About the Diagnosis
Deciding what to tell children is one of the hardest parts of a diagnosis. Research with Australians living with pleural mesothelioma found that breaking the news to spouses and children was one of the main concerns for patients and carers.5
Prof Hickie’s first piece of advice is to “get the story straight in your own head first”. Hiding a diagnosis from children rarely works. They usually sense that something is wrong. What helps is hearing both what is happening and what the family plans to do about it.
Younger Children
Primary school children are often smarter than we think, but they can misunderstand what they hear. They think in concrete terms, so use clear, simple words rather than vague ones. Be honest about what you know and what you do not know yet, and tell them what will stay the same, such as going to school, holidays or birthdays.
Teenagers
Teenagers can usually take in more detail about the illness and what it may mean. They still need to hear the plan, and to know they can ask questions.
Whatever their age, come back to the conversation later. Children often ask questions you did not expect, such as “Can other people catch it from you?” or “Can my friends still come over?”. Checking what they have understood helps clear up worries and misunderstandings.
Cancer Council Australia has practical guidance on talking to children about a serious diagnosis.6
Telling Friends and the Wider Circle
Telling the same news over and over can be exhausting. Some people choose to send one group message so that everyone hears at once. Prof Hickie suggests thinking about who you most want to hear from. A mass email can feel impersonal to the people receiving it, and some may not know how to reply.
He suggests a graduated approach:
- Send personal messages to the people closest to you, and let them know if you would like to catch up later.
- Share the basic information with people who just need to know, without inviting a flood of calls.
- Tell people it is fine to pass the news on.
- This saves you having to repeat the story many times.
When to Get Professional Support
Support for Carers
Partners and family members who are doing a lot of the caring need support too. Australian research found that the emotional and physical load of caring for someone with mesothelioma is significant, and that carers need one-on-one support.2 An Italian study of 108 patients and 94 family carers found that both groups can experience symptoms of depression and trauma after a mesothelioma diagnosis.7
Short Term Support Early On
Even if you feel you are coping, Prof Hickie recommends talking with an independent professional early on. One to three sessions with someone who has psychological skills gives you space to say what is on your mind with someone outside your family and friends. Many cancer services now recognise the value of this.
If Distress Does Not Ease
If low mood, anxiety or distress continue and make it hard to cope with daily life, more formal counselling can help. Your GP can talk with you about a mental health treatment plan.8 Prof Hickie notes that many larger public hospital services offer psychological support for people in this situation, because of the urgency and, at times, the complexity involved. Ask your treating team what is available.
You can also call Cancer Council on 13 11 20 for information and support.9 Research with Australians living with mesothelioma has highlighted the value of peer support and effective psychological services.5
If You Need Help Now
If you are in crisis or thinking about harming yourself, call Lifeline on 13 11 14 (24 hours) or Beyond Blue on 1300 22 4636. In an emergency, call 000.
Frequently Asked Questions
Is it normal to feel nothing after a mesothelioma diagnosis?
Yes. Numbness and a sense that the news has not sunk in are common in the first days. Many people focus on practical tasks first, and the emotions can arrive later. If you are worried about how you are feeling, talk to your GP or an ADDRI support nurse.
How can I support someone who has just been diagnosed?
Be there and listen, rather than rushing to fix things. Let them express anger or fear without shutting it down. Offer to go to appointments with them, and look after your own wellbeing too.
Should I tell my children I have mesothelioma or silicosis?
Hiding a diagnosis from children rarely works. Get clear in your own mind first, then use honest, age-appropriate language. Tell them what is known, what is not known yet, and what the family plans to do. Check back later to answer their questions.
Where can I find a mesothelioma support group?
ADDRI runs a Mesothelioma Support Group in Sydney, a monthly online group called Meso Hour, and a bereavement group. Contact the ADDRI support team to find out more.
Can I get counselling after a dust disease diagnosis?
Yes. Your GP can talk with you about a mental health treatment plan, many larger public hospitals offer psychological support, and ADDRI’s support nurses can help you find the right service.
How do I cope with losing my job because of silicosis?
Losing your trade can affect your sense of identity as well as your income. It can help to focus on what you can still do and to explore retraining or new directions with support. The Silicosis Support Hub has information for workers and families.
How ADDRI Can Help
You do not have to manage this alone. ADDRI’s specialist support nurses offer free information and emotional support to people with dust diseases and their families, by phone, face to face and through groups.
- Pam and Carmel, Mesothelioma Support Coordinators
- Jenny, Silicosis Support Coordinator
- Mesothelioma Support Group, Revesby
- Workers Club (every second month)
- Meso Hour, a monthly online support group
- EPP Well Living Group, Drummoyne Sailing Club (three times a year)
- Bereavement Group, icare Dust Diseases Clinic, Sydney
Call 02 9767 9854 or email support@addri.org.au. For silicosis support, email silicosis.support@addri.org.au.
To hear the full conversation with Prof Ian Hickie, listen to the episode on Dust Disease Diaries.
References
- Dust Disease Diaries. The psychological impact of a life-limiting diagnosis [podcast]. Professor Ian Hickie in conversation with James O’Loghlin. Asbestos and Dust Diseases Research Institute; 19 May 2026. Available from: https://creators.spotify.com/pod/profile/dust-disease-diaries/episodes/The-psychological-impact-of-a-life-limiting-diagnosis-e3jh3nb/a-acll1f1
- Girgis S, Smith A, Lambert S, Waller A, Girgis A. “It sort of hit me like a baseball bat between the eyes”: a qualitative study of the psychosocial experiences of mesothelioma patients and carers. Support Care Cancer. 2019;27(2):631-638. doi:10.1007/s00520-018-4357-0
- Ejegi-Memeh S, Sherborne V, Mayland C, Tod A, Taylor BH. Mental health and wellbeing in mesothelioma: a qualitative study exploring what helps the wellbeing of those living with this illness and their informal carers. Eur J Oncol Nurs. 2024;70:102572. doi:10.1016/j.ejon.2024.102572
- Hore-Lacy F, Hansen J, Dimitriadis C, Hoy R, et al. Predictors of psychological stress in silica-exposed workers in the artificial stone benchtop industry. Respirology. 2022;27(6):455-461. doi:10.1111/resp.14257
- Breen LJ, Same A, Peddle-McIntyre CJ, et al. Psychosocial needs of people living with pleural mesothelioma and family carers: a mixed methods study. Psychooncology. 2024;33(11):e70031. doi:10.1002/pon.70031
- Cancer Council Australia. Talking to kids about cancer. Available from: https://www.cancer.org.au/cancer-information/living-with-cancer/talking-to-kids-about-cancer
- Bonafede M, Granieri A, Binazzi A, et al. Psychological distress after a diagnosis of malignant mesothelioma in a group of patients and caregivers at the National Priority Contaminated Site of Casale Monferrato. International Journal of Environmental Research and Public Health. 2020;17(12):4353. doi:10.3390/ijerph17124353
- Healthdirect Australia. Mental health treatment plan. Available from: https://www.healthdirect.gov.au/mental-health-care-plan
- Cancer Council Australia. Cancer Council 13 11 20. Available from: https://www.cancer.org.au/support-and-services/cancer-council-13-11-20
