Living with mitochondrial disease (mito) is different for everyone. Looking after your wellbeing is about finding what works for you.
This page shares simple tools and ideas to support your mental health and help you keep doing what matters to you.
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Mental Health and wellbeing
Mitochondria and your brain
Your brain needs a lot of energy, but mito makes it harder for your cells to make the energy your brain needs to work well. When energy is low, it can affect things like your ability to think clearly, your memory, and your mood.
Building strength through change
For some people, the first signs of mito may be changes in mental health, even before a diagnosis. Not everyone with mito will experience mental health challenges. However, recognising these changes early can help you find the right support.
Living with a long-term condition like mito affects more than just your body — it influences your whole life. Learning to manage symptoms, attending appointments, and adjusting to new routines takes a lot of energy and courage to keep going.
Many people with mito find strength through connecting with others, developing strategies that work for them, and focusing on what brings them joy and purpose.
Challenges like feeling isolated, explaining mito to others, or managing financial or work-related stress can be difficult. Seeking support and using available resources can make a big difference in staying mentally well.
Strength looks different for everyone
The mito community shows strength in many ways. In how they cope, connect, care, and keep going. Here, members of our community share what strength means to them, and what it looks like in their lives.
Strength for me is the people I have around me. The people who show up day after day, even on my worst days. The ones who sit with me in sadness, happiness, and everything in between. The ones who see me for me, not mito.
— Laura, adult with mito, 2025
For me, strength is the quiet courage to keep going—some days that means showing up, other days it means resting without guilt. There are times I cancel plans or need help with simple tasks, and that used to feel like failure. Now I see it as part of resilience. It looks different for everyone, and in our community, there’s comfort in knowing we’re not alone.
— Kim, adult with mito, 2025
At first, taking early retirement felt like I was giving up; I worried it meant I’d failed. But since stepping away from full-time work, my health has improved, and I’ve come to see it as the right choice for me. It took strength to put my wellbeing first and not just follow what others were doing. I’ve found a new purpose working from home, which keeps me connected and challenged in a way that works for me.
— Diane, adult with mito, 2025
I’ve learned that I don’t need to compare my illness to anyone else’s to know that what I’m going through is real.
— Jane, adult with mito, 2025
Need support?
There are lots of services that can help with your mental health and wellbeing. Some offer information and tools, others give you a chance to talk to someone. Find the support that’s right for you.
Looking after your mental health matters
The Australian Patient Care Standards for mito recommend that health professionals support mental wellbeing by routinely checking for signs of anxiety and depression. This is important because mood changes can sometimes be linked to changes in the brain or nervous system. For children, it’s also recommended to check in on self-esteem and social confidence, especially if physical impacts affect their ability to join in activities like sports. These checks are general guidelines and might not apply to everyone with mito, but they’re a helpful reminder that mental health is an important part of overall health.
How mito can affect mental health and thinking
Many people with mito experience changes in their mental health. Research shows that people with mito are more likely to experience depression, anxiety, or behavioural changes, in both adults and children.1–4
These changes are linked to how mito affects the brain and body. Mitochondria play a big role in brain health. When they don’t work well, it can make it harder to manage mood, energy, and emotions.
Understanding that these changes are part of mito may help you feel less alone. They are not your fault. Support is available, and recognising the signs early can help you take action that improves your wellbeing.
Mental health conditions that may occur with mito are:
Everyday challenges that can affect your mental health with mito
Fatigue and brain fog
Fatigue is a common symptom of mito. It can make it hard to think clearly, sometimes called brain fog, and is often one of the most challenging symptoms. When you’re exhausted, it can affect your mood and make things like work and daily tasks more difficult. It’s also linked to higher feelings of stress or anxiety.10 But it’s important to know that there are ways to help manage fatigue.
Fatigue and brain fog
Fatigue is a common symptom of mito. It can make it hard to think clearly, sometimes called brain fog, and is often one of the most challenging symptoms. When you’re exhausted, it can affect your mood and make things like work and daily tasks more difficult. It’s also linked to higher feelings of stress or anxiety.10 But it’s important to know that there are ways to help manage fatigue.
Frustration and grief
The unpredictable nature of mito, along with a lack of current treatments, can create feelings of frustration and grief. Many people with mito also face stigma, which can lead to social isolation. Additionally, delays in diagnosis and a lack of awareness from health professionals can add to the emotional strain. It’s common for people with mito, their families, and carers to experience these feelings. Seeking support can help manage these emotions and improve your wellbeing.11
Frustration and grief
The unpredictable nature of mito, along with a lack of current treatments, can create feelings of frustration and grief. Many people with mito also face stigma, which can lead to social isolation. Additionally, delays in diagnosis and a lack of awareness from health professionals can add to the emotional strain. It’s common for people with mito, their families, and carers to experience these feelings. Seeking support can help manage these emotions and improve your wellbeing.11
Stress
Living with mito can be overwhelming, and stress can be a common challenge. Stress can affect the body’s ability to function properly, impacting how your mitochondria function. This can lead to further difficulties, like delays in development for children or cognitive changes for adults. Finding ways to manage stress, such as relaxation techniques or support groups, can make a big difference.1,12,13
Stress
Living with mito can be overwhelming, and stress can be a common challenge. Stress can affect the body’s ability to function properly, impacting how your mitochondria function. This can lead to further difficulties, like delays in development for children or cognitive changes for adults. Finding ways to manage stress, such as relaxation techniques or support groups, can make a big difference.1,12,13
Medications don’t always work the same way for people with mito
Some medicines used for mental health conditions can help or harm how mitochondria function. Always discuss new medications with your health care team and mito specialist.14
Your wellbeing is as important as your physical health
Mito may bring challenges, but with the right support, you can take care of your mental health. You don’t need to wait until things feel too hard. Support can start at any time.
There are lots of services that can help with your mental health and wellbeing. Some offer information and tools, others give you a chance to talk to someone. Find the support that’s right for you in our Wellbeing Hub.
Things that might help
Staying in touch with friends, family, and support groups.
Doing things you enjoy, even small activities like listening to music or being in nature.
Get enough rest and find ways to manage your fatigue.
Share how you’re feeling with someone you trust.
Let others help when it’s offered, or ask for help when you need it.
Staying in touch with friends, family, and support groups.
Doing things you enjoy, even small activities like listening to music or being in nature.
Get enough rest and find ways to manage your fatigue.
Share how you’re feeling with someone you trust.
Let others help when it’s offered, or ask for help when you need it.
When to get help
It’s okay to ask for help when things feel tough. Talking to a health professional can help you manage your feelings and find solutions that work for you.
Some signs you may need extra support:
- feeling sad or worried most of the time
- getting easily confused and annoyed
- not talking to family and friends
- not enjoying the things you used to do
- changes in your symptoms or how you sleep
- finding it hard to think clearly and concentrate
- thinking about hurting yourself or others.
Need support now?
You can find support straight away from the services listed on this page. If you or someone with you is in immediate danger, call 000 or go to the nearest hospital emergency department.
Lifeline
For all ages | Always open
Lifeline offers free, confidential support. You can speak to a trained crisis supporter over the phone, any time of the day or night.
13YARN
For all ages | Always open
A free and confidential crisis support line for Aboriginal and Torres Strait Islander people, offering culturally safe support from trained crisis supporters.
Kids Helpline
For young people | Always open
A free, confidential phone counselling service for young people aged 5 to 25. Call anytime to speak with a qualified counsellor about anything on your mind.
More services to support you.
There are many services available to support you. You can use the search tool to explore your options and find the support that suits you.
It’s okay to take your time. There’s no right way to do this. Start with one thing that feels useful to you, and come back when you're ready.
Carers NSW
Information
Open weekdays
NSW
Parents and carers
Help for carers in NSW with info, counselling, and services to support safe care and daily life.
Carers NT
Information
Open weekdays
NT
Parents and carers
Support for NT carers with advice, counselling, and ways to look after your wellbeing and caring role.
Carers QLD
Information
Open weekdays
QLD
Parents and carers
Support for carers, including NDIS help, services, and tips to care for others and yourself.
Carers SA
Information
Open weekdays
SA
Parents and carers
Carers SA offers programs and counselling to help balance caring with health, work, and daily life.
Carers TAS
Information
Open weekdays
TAS
Parents and carers
Offers support, advice, and connection for carers in Tasmania to help manage caring and stay well.
Carers VIC
Information
Open weekdays
VIC
Parents and carers
Supports carers across Victoria with information, events, and services to help them care and stay connected.
Carers WA
Information
Open weekdays
WA
Parents and carers
Carers WA offers free online, phone, and in-person support, services, and advice for carers.
Embrace multicultural mental health
Information
Limited hours
Australia-wide
Culturally and linguistically diverse communities
Embrace supports the mental health of multicultural communities with free resources, information, and stories.
Neve
Information
Always open
Australia-wide
All ages
Neve is a safe and welcoming website made by and for women, girls, and gender-diverse people with disabilities.
Neve (Easy Read)
Information
Always open
Australia-wide
Culturally and linguistically diverse communities
Neve is a safe website for women, girls, and non-binary people with disability. Learn about health and safety.
Tired of explaining mito?
Information
Always open
Australia-wide
All ages
Helps you explain mito to your health care team. Share this webpage so they can understand your condition more easily.
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Helpful resources
​​Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information's accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.​
Acknowledgement: Mito Foundation acknowledges the valuable contributions of our reviewers, we thank Diane Cass (Accredited Mental Health Social Worker) and Shelley Beverley (Registered Psychologist) for their review. As well as Dan and Kim members of the mito community resource review panel.
Author: Mito Foundation
Version: 1
Date published: ​Monday 30 June 2025
