Introduction to My Story

This section is about you. Sharing how the disease impacts your life, your family and your adventures is very important as it helps you develop a perspective and importantly, allows others to see that their experiences are not unique.  

We would love you to tell us YOUR story.  Start your story using some of the dot points below to help construct it. This will be your journal, your story and you'll have lots of space. All the stories together become a very useful community resource. We can learn from each other so write your story but please do not identify a clinician by name!

Member story titles will be listed for all members to select and read at their leisure. Once you have written your story send it by email to This email address is being protected from spambots. You need JavaScript enabled to view it.  and we will mount the story on to this website for all members to read.

• In the early days, what impact did the disease have?
• What is your disease, when and how did it start?
• Did you feel that something was not quite right? Can you describe this?
• How did your life change when you were first told about your disease?
• Write about your journey through the health system; the good, bad and ugly
• How did you explain your situation to family and friends?
• Write about the support you have and the support you did not get.
• What about drugs; using them, getting off them and side effects.
• Write about work or the lack of it and how you cope.
• How did those at work regard you?
• What things have you learnt?
• What about the future?