July 24th, 2023 10:33 am

It’s National Pain Week And I’m Celebrating by Writing the End of this Story

By |2023-07-24T10:35:43+10:00July 24th, 2023|Categories: Advocacy, Blog, Online|Tags: , , |

Every year I think something amazing will happen during National Pain Week. But every year, nothing amazing ever does. We all wait for answers, but either the answers don't come, or they prove more tiresome. Worst of all, the answers are a direction to a lonely zone – the figure-it-out-yourself zone! So, figure it out myself; I will this year! I'm making National Pain Week AMAZING by writing the end of this story. 

April 8th, 2023 1:45 pm

My recent chat with PainAustralia’s new CEO, Giulia Jones – Giulia has quite the agenda!

By |2023-04-09T11:14:47+10:00April 8th, 2023|Categories: Advocacy, Blog, Online|Tags: , |

Making the invisible visible You'll hear this wonderful reference in my chat with Giulia – to make what is invisible visible is one of her four goals while in the position of CEO at PainAustralia.  I found Giulia incredibly down-to-earth and easy to connect with. Of course, with six children, you instantly know she understands pain (and is highly able!!), but her admission that she had never thought of the pain she experienced as chronic really struck me. 

March 7th, 2023 6:07 am

Soula Mantalvanos in Times News Group’s Women in Business International Women’s Day 2023 Edition

By |2023-03-06T20:09:22+11:00March 7th, 2023|Categories: Advocacy, Blog, Help, My Health Story, News, Online|Tags: , , , , |

(Image: Soula Mantalvanos, founder My Health Story features in Women in Business, Bellarine Times International Women’s Day special edition 2023) Feature, Women in Business, Bellarine Times International [...]

October 4th, 2022 2:30 pm

WEBINAR: Can visualising the personal health experience lead to better care and understanding?

By |2022-10-04T14:30:46+11:00October 4th, 2022|Categories: Advocacy, Events|Tags: , , , , , , |

Can visualising the personal health experience lead to better care and understanding? You all know what I think and believe about this. But now, I'm aiming to inform the rest of [...]

September 24th, 2022 11:50 am

My Lived Experience at CODA Conference

By |2023-02-25T11:08:42+11:00September 24th, 2022|Categories: Advocacy, Blog, Events, Learn, Professional Resources|Tags: , , , , |

The Primary Care workshop at this year's CODA Conference was my favorite lived experience contribution to date! The workshop approach was more effective than my other 'standup gigs'. Something has clicked with me lately – I've stepped out of chronic illness's emotional and physical sides and more often partaking in health education. I like it! We must believe that twitches, spasms, toilet function-changing effects, noise, screaming, soreness, stabbing, burning, itching, fatiguing, and draining effects of chronic pain can be controlled. If you had told me this between my first and 4.5-year mark, I would have felt angry and said, 'My issue is severe, far more serious than everyone realises, and my healthcare practitioners are all missing the terrible thing in my body, and I am going to die from it.'

April 12th, 2022 8:53 pm

Soula Mantalvanos, Published Author of the Journal of Medical Internet Research

By |2023-01-24T16:12:25+11:00April 12th, 2022|Categories: Advocacy, Blog, Learn, Living, Online, Professional Resources, Workcover|Tags: , , , , , , |

I'm an author of What Injured Workers With Complex Claims Look For in Online Communities: Netnographic Analysis, now published in one of the world's best medical journals.  

February 26th, 2022 2:09 pm

Mentorship Supported by the Australian Government Boosting Female Founders Initiative

By |2022-11-26T20:58:47+11:00February 26th, 2022|Categories: Advocacy, Blog, Online|Tags: , , , |

Congratulate me! I have been awarded expert mentoring with Buzz Web Media and Women With Wit’s – Lee Ussher under the Australian Government’s Boosting Female Founders Initiative (BFFI) for PainTrain [...]

February 15th, 2022 12:32 pm

The Business of Advocacy

By |2022-02-15T12:32:14+11:00February 15th, 2022|Categories: Advocacy, Blog, Online|Tags: |

Over some years and after a third time being banned in some way or form from an official pain organisation's social media, I now feel encouraged to make a point - advocacy is not a business. I began this website to advocate for people living with chronic pain and share helpful resources to avoid the impact of misdiagnosis on their lives. I aimed and achieved gratitude on a global scale, which has fed me. I also started this website to connect people living with chronic pain to professionals who understood them very well and could possibly treat them. I've asked none of these amazing professionals to pay me to be included on this website – we're all working for the same cause, right?  This was never intended to be a business. What I'm seeking is more respect and understanding for the voluntary position of the advocate. So let's pull the bandaid off and frankly define it: Advocacy is costly and time-consuming. It earns us no income; it causes pain and uses a significant portion of the little and precious uptime we get and, advocates are also much greater than their cause. I repeat; advocacy is no business. 

December 3rd, 2021 2:49 pm

Presenting My Pain Management Story and Vision at the Murray City Coast Country GP Training

By |2022-11-26T20:58:48+11:00December 3rd, 2021|Categories: Advocacy, Blog, Events, My Health Story|Tags: , , , , , , |

It was wonderful sharing my story and vision at the Murray City Coast Country GP Training. AND especially presenting on a stage and in actual physical life to 50 general practitioners (GPs) who [...]

November 26th, 2021 1:12 pm

Presenting at the Murray City Country Coast GP Training Event

By |2022-11-26T20:58:48+11:00November 26th, 2021|Categories: Advocacy, Events, Learn, Professional Resources|Tags: , , , , , |

There are no formal qualifications for someone living with chronic pain but patients are considered 'patient experts' and our lived experience is very much valued. I've been invited to several seminars and training sessions relating to chronic pain over the course of my 14-year experience. It's of great significance for me to be able to use the lived experience – no other value for it really!

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