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When you have a chronic illness like mito, one of the most important things you can do to help yourself is to speak up for your needs. This doesn't mean your care team isn't supportive. They may genuinely want to help. However, some people with mito find that their concerns are not taken seriously, leading to a delay in getting the right care for many years.

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Get in touch by contacting our Helpline at 1300 977 180 explore our information and resources to find the help you need.

Here are some ways to help you be your own advocate:

  • Prepare for your appointment. See Preparing for a medical appointment for more information.
  • Look for good quality health information so you are well informed to ask the right questions. See Evaluating online health information for more information.
  • Be prepared to work towards the health outcome. Implementing the agreed care plan can difficult, but try working on one goal per week before moving on to the next.
  • Be sure there is mutual respect and shared decision-making between you and your care provider. If not, consider finding a new health professional.

Helpful resources

Link to Employee rights with mito Fact Sheet Page

Employee rights with mito

Fact Sheet Page

Understanding your rights as an employee with mitochondrial disease (mito) is crucial in preventing disability discrimination. This resource provides guidance on recognising your rights, navigating workplace challenges, and what steps to take if you believe you have been treated unfairly.

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Important information
about medicines

Fact Sheet Page

People with mito can react differently to medications. International Mito Patients (IMP) and LHON Collective provide lists of medicines that are safe, should be used with caution, or avoided.

Link to Building a care team in rural and remote Australia Fact Sheet Page

Building a care team in rural and remote Australia

Fact Sheet Page

In rural and remote Australia, accessing good health care can sometimes be tough. But finding a care team that really understands what you need can make all the difference.

Link to Preparing for a medical appointment Fact Sheet Page

Preparing for a medical appointment

Fact Sheet Page

The information provided focuses on how you can prepare for your medical appointments. For example, for an appointment with your GP, endocrinologist, or dietician. It also focuses on how your mito specialist can support your ongoing care, to ensure you receive the right care.

Link to Making health and medical decisions Fact Sheet Page

Making health and medical decisions

Fact Sheet Page

You have the right to make informed decisions about your healthcare. This includes asking questions, being part of discussions, and making choices.

Link to Government support Webpage

Government support

Webpage

Costs associated with a chronic disease such as mito can soon escalate and can be compounded by a loss of income. This webpage provides information about government support and payments you may be entitled to.

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.

Author(s): Mito Foundation
Reviewer(s): Members of the mito community
Version: 1
Date published: Wednesday 29 November 2023