(Story from My Health Story Founder, Soula Mantalvanos’ blog pudendalnerve.com.au)
I’m a proud buttercup. Despite my many ongoing limitations, I feel I’ve come a long way.
And today, I have a huge milestone to celebrate with you.
But first, shall I reflect?
The earliest evidence of being able to again participate in life was the posting of my first Instagram. It was July 2011, a few months before I began this website.
I remember Instagram forming a lifeline to my creativity when my phone and a glass of water were too heavy for me.
After Instagram, more abilities began to very slowly unravel. I began to sit a little longer, think broader, and make a little more. I started building ideas a little grander and executing them.
Over the past 15 years, I have watched myself rise above the injury that changed my body in 2007.
I have made a book and a short documentary, became an advocate, contributed to a medical journal and helped with medical GP training.
And now the triumphs
My three grandest triumphs have been re-establishing life to contribute to my and Theo’s livelihood, protecting our great love, and turning 15 years of complicated health into a chronic health management system so I can help others.
Today, I officially celebrate the third triumph by bringing My Health Story (MHS) to your App store.
Go on, take a look – it’s there!
If only…
I know that people living with chronic pain need a quick fix. If only I could find that for us all…
Alas!
Knowing I couldn’t find that solution, I focused on something that might help us all with our long road – healthcare practitioners included. So, instead, I applied my design skills to MHS. I’m aiming for a systematic change in the way we manage our health.
MHS helps organise you and your health issue/issues. In other words, it helps you not go crazy at appointments and supports you whenever you need it.
I know it isn’t ideal to add another to-do to your mile-high list of want-to-do that you’ll never get-to-do because you just-can’t do.
And yes, I know that motivation, energy and organisation don’t come easy to people struggling with day in day/day out health issues.
But I also know what’s worse. Repeating traumatic details and constantly being misunderstood.
Things like:
- Going to appointments and forgetting what you were going to say
- Forgetting to communicate a small but key detail that no healthcare practitioner will ever think to ask
- Not having your complete story in hand
- Having to ask for your health information all the time (and often pay for it!)
- Not asking for your health information and having it handed over with the wrong details
- Enduring dumbfounded looks from a new practitioner
- Thoughts of, ‘How will I get through this again?’ and/or
- Leaving the appointment and knowing, ‘you spent that painful time for nothing?’
The nightmare scenarios go on, but I think the worst I’ve experienced (aside from 4.5 years of misdiagnosis) is feeling lost as a human being in a whole process that’s meant to be about ‘healthcare’.
Let’s change the experience
I realised early on that I, Soula, the way I live and the type of person I am, together with my story, were fundamental to appointments and my treatment. In addition, I realised my health experience was unique and needed to be understood.
Professionals are understanding this a lot more now. On educational health networks, I see this ‘tip’ all the time now:
People with invisible illnesses are more than their diseases
And on professional forums, I read how lost practitioners are as to how to help people living with ongoing illnesses (which also explains why so many of us are enduring long-term illnesses!).
So are you ready to navigate?
Are you ready to put your unique experience forward and be better understood? Then, your story is the most essential part of this change.
If you need some guidance, I’m happy to zoom in if you need online training sessions, or you can email me a ‘how do I…’ question, and I’ll film the answer for you.
Please like/follow MHS (facebook, twitter, insta) and/or send me your testimonial.
Let’s change the system of care for people living with ongoing illnesses.
