Talking to others about mito may seem overwhelming, especially because many people may have never heard of mito. When you feel ready, decide who to tell and what to say. We recommend you prepare for these conversations.

Talk to family and friends

Consider the following:

  • Choose a quiet time and place, if possible.
  • If you are worried about finding the conversation difficult, you might like to ask a loved one to help you tell others or to tell others on your behalf
  • Remember that mito is complicated, and there can be a lot of medical information to explain. It is easy to feel overwhelmed when sharing your news. Writing down the key points may make it easier for you to stay on track.
  • Share only what you're comfortable with and be clear on what you would like to achieve by having this conversation. Are you asking for support?
  • People have good intentions and may try to empathise or offer medical advice. They are generally only trying to help, so be prepared for phrases like "I'll keep that in mind," or "thank you for your question." You can end the conversation at any time if it becomes too much.
  • Consider how family members may be impacted by any results from a genetic test and what questions they may ask.
  • Remember, it's okay not to have all the answers.

If you need more information or someone to talk to, you can call our helpline on 1300 977 180. We're here to help you through this journey.

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