There are so many benefits to having a PainTrainMHS.
Aside from your own personal purposes of having all your information in one place, I find it really cathartic to build and document the story.
When viewing my enormous health timeline (pictured), I feel like I’ve put the information and experience somewhere – it makes it authentic and validates it.
Few people validate our experience of living with chronic pain. But this is a way I can validate it and value it. I want others to validate and respect it too. PainTrainMHS helps me do that when I present the information.
Showing this to various practitioners and hearing their responses means a great deal to me. It also means a great deal that they grasp an in-depth understanding of my experience. No GP referral letter will ever include this much detail. I always find important information about me has been left out of the letter.
All these feelings and activities are part of my pain management strategy – it’s not all just about treatment, it’s also so much about what I manage day-to-day, and there is so much detail in that day-to-day management.
What I also see looking at my timeline is how my appointments have gone from red (bad) to blank (neither here nor there) to green (good).
My experience is shown precisely and all it took was a glance.
Have a look at how lost I was in the first few years… it was awful!!!!
I’ve come a long way, and as you can see, now all my appointments are helping me somehow (all labelled green and good). They are not a waste of time – painstaking time that all of us endure enough of already.
PainTrainMHS has a long journey ahead. I believe in it as I do in my design and chronic pain experience – both are substantial. Yes, I’m a patient taking on a huge healthcare behaviour change but if it’s true that lived experience is valid for science and research to pave the way forward within the area of chronic pain, then this must count for something.
PainTrainMHS is in need of being made available for people without internet but that is going to cost well over 30k which I obviously can’t afford. I also struggle with the app situation as I want real-time updates across all devices and that is another costly feature.
For these reasons, I’d rather prioritise that PainTrainMHS works on all your devices for now albeit it relies on an internet connection (one thing at a time right?).
Any support is welcome in the area of tech development, evaluation and promotion. And I’d LOVE to hear from PhD students!!!!
Clearly, if you’re wanting to get your health summary started, then hit the button. If you need help, just holler we can do some zoom training or if you like learning in your own time, head to the PainTrainMHS videos.