The fabulous Evelyn Hecht (and our comrade of the pelvic pain world), who created Pelvic Sense, has an invitation for you. If you are experiencing persistent pelvic [...]
Although pain management is the undercurrent of my life, it no longer rules my life activity. This is a tricky mind battle that underlies everything I do. [...]
When will patients be understood and listened to?! It’s obviously necessary to have a peak body addressing the needs of the pain community. Still, the frustration of [...]
Self-management is hard, chronic illness is overwhelming. Chronic illness robs you of your independence and control, leaving you feeling defeated and mentally and physically drained. Add to the endless appointments required; now, we also have to be considerate of healthcare systems under pressure. Guess who gets the short end of the stick? We pay with our lives. Perhaps healthcare systems were destined to burst their stitches because healthCARE was never built to care for people; it was made to keep people relying on it. That's not care. Can taking more ownership of our health make a difference?
In 2011 when I built pudendalnerve.com.au, the internet was starved of helpful communities and resources. It was the very reason my advocacy began. I didn't want anyone to be as lost as I was on my search for important health information. There were few online portals where people could connect, and the only health information available was through science journals – no individual could understand them! Health orgs that did have a web presence seemed not to have a dialogue with the consumers they claimed to exist for. Thank goodness that's changing, but we still have a way to go as the usual questions remain; What is chronic pain? How can we manage chronic pain and its symptoms and effects? What are the best treatments, and why is there such a lack of understanding? etc This is where Nerita Lewis comes in with her idea to democratise healthcare with Jaspen.
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.'
Since investigating my DNA with Dr Valerio Vittone, I believe more that my health issue is not about chronic pain but rather about inflammation. I've reaped magnificent rewards since implementing recommended dietary [...]
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.
My Health Story is now live and has totally replaced PainTrain My Health Summary. My Health Story goes beyond helping people communicate their stories of living with chronic pain. It now presents a way for more individuals enduring chronic and complex health issues to communicate their health stories and manage their healthcare better. For healthcare practitioners, it presents an opportunity to diversify your care offering and influence positive behaviour in the overall patient journey. My Health Story takes a holistic view of each unique lived experience and understands that patients are more than their disease.
I'm thrilled to be invited to another educational event IN REAL LIFE I might add. I really enjoy collaborating with Dr Paul Grinzi as a lot of his educational workshops have a great focus on communication. If people and their health teams can't connect then care isn't going to happen. So how do you reach, connect and help people who live with chronic pain? Come along and learn! PRIMARY AND ACUTE CARE Chronic persistent pain is a common clinical issue, and yet most of us have received very little training in how to best manage patients experiencing this. Not only do we have to manage the clinical and psychosocial issues presented by the patient, we have to recognise and manage our own biases as clinicians. The format for the workshop utilises patient experiences, clinical cases and new frameworks to help further our understanding of persistent pain and how to assist our patients. There is a specific focus on management within the community, but also opportunities to explore the challenges within the emergency and inpatient hospital interfaces. By the end of this half-day, you’ll have optimised your approach, and may find this topic a little less painful.
