No, I’m not about to preach about finding God. I mean the other God – your health professional.
I’ve had many dilemmas trying to manage chronic pain.
The obvious ones relate to seeking appropriate treatment and managing life – money, bills, commitments, family, friends… if you’re reading this, you probably know how that paragraph ends.
But I’ve had an additional, personally inflicted dilemma and that’s to make something of my situation and further still, have the experience validated.
I don’t think we can control self inflicted dilemmas. In fact it’s hardly a dilemma, it’s more like a personal trait that I owned long before my injury.
I’ve taken that one step further by founding Pain Train – an online health record website for people exactly like me.
Embracing the health care system’s push for self managed care
I find it difficult to sit still (pun intended), when I can see a way to make a change for the better and to help others. In the case of Pain Train, it was actually creating something that didn’t even exist in the chronic pain world.
The Gods we look upto had nothing to offer in this area – it didn’t exist.
So I repeated my story, as you did/do a few million times during the few million appointments.
Exhausting! Not to mention impossible.
How are patients and their teams meant to manage (you know the thought, surely God doesn’t expect me to repeat myself, again!)?
Yes, the Gods do expect you to repeat yourself. How else can they help you?
Well, there’s an easier way for both of you/us!
Now that I’m able to manage life a little better and having worked up from a place where it was impossible to even think a basic idea through for even 1/2 a minute, I feel the personal experience with pain and endless blank stares between me and the Gods had to morph beyond another patient story.
My limitations are still immense. In fact I keep myself busy by focusing on my abilities. I have become really great at this.
Until, a rare event such as this week’s happens and a dear contact asked me how I managed driving.
In these moments I face the seriousness of my chronic illness. I plummet and am grateful for the (other great) trait that swiftly picks me back up calling out, ‘quick Soula, you need to help someone’.
I answered, ‘I manage driving by never driving’. And actually explained that I actually avoid being in the car which means I don’t get out of the small town I live in nor see the many people I love.
That’s huge, enormous, real time crap!
Back to patients and the Gods and introducing Pain Train.
Pain Train is part of a new era of digital health which may be a little daunting to patients and health professionals – all industries, even our daily devices send us spinning through rapid changes – it’s all too fast and all too quick. But some new inventions are really worth it.
For those who are embracing the billowing messages that health care systems are pushing around the world it can be a little frustrating when we meet those who aren’t.
Scenario: me and my God
I mentioned Pain Train to Dr Christelis and sent him a private link to my profile – he was keen! While I was post-op after the second stim implant I kept my status updated and knew Dr Christelis had the private access to my profile. I was able to log in and see that he had checked in via the private link.
Oh the relief! The support! The relief! And it was so simple. The relief!
A teeny thing – a mammoth difference to my care and to me!
In actual fact, I based the Pain Train Patient Questionnaire on the one I received from VicPain. Take a look, at the Me with the Pain section). And it’s a questionnaire that is adjustable by the patient.
Moving on from the old model of care
You could well be feeling really nervous about rocking up to your next appointment with a pain management idea that God might not have heard of. Or you might be daunted that God pushed for you to self manage and you can’t bare the thought.
Here’s a little shove by John Quintner and Professor Cohen M from The challenge of validating the experience of chronic pain: the importance of intersubjectivity and reframing. In: van Rysewyk S (ed) Meanings of Pain. Springer – the latest in pain management:
Why is the management of chronic pain so unsatisfactory and frustrating for both the person experiencing pain and the attending health professional?
The biomedical model of illness, which has long dominated Western healthcare, turns on the ability of a clinician to validate a patient’s clinical presentation by demonstrating an underlying disease process through a commitment to obtaining empirically observable…
However, this criterion of validation breaks down in those forms of illness in which there is no demonstrable pathophysiological evidence of disease (Wade and Halligan, 2003).
I admit health professionals can be intimidating but patients can also be swamped by their illness and thinking ‘it’s not my job to fix me’.
But now we know (I know, and I know you know because you’ve been following me) that to manage chronic pain – self management and YOUR voice are required.
More from my friend:
Another, older connotation of the word “validation” (from its Latin root) is “strengthen.” This can itself add another ethical dimension to the role of the physician, through the act of “being with” the patient-experiencing-pain in the intersubjective space and negotiating an interpretation of the patient’s narrative through dialogical discourse, the clinician is able to provide a satisfactory explanation of the patient’s predicament and lay the groundwork for the patient to play an active role in addressing that predicament. The strength of this approach is that it increases the likelihood of adherence to prescribed therapy, and implementation of strategies of self-monitoring, self-management and self-efficacy.
It’s really the time to move forward with pain management now that health care systems around the world have changed their tune. And as a patient battling chronic pain for over 10 years seeking to validate the experience, I couldn’t feel more positive that Pain Train is going to bring it to me.
Pain Train is free for one month and thereafter $49 per year in Australia or less 10% for international users (less our Government tax).
If you’re one of my followers, email me for a half price coupon. And pleeeeeease, pleeease send me your feedback after you chat to your God!