Yesterday I testified on House Bill 1009, Diabetes Drug Pricing Transparency Act 2018 in the Colorado State Legislature’s House Health, Insurance, and Environment Committee. Today is the other side of advocacy.
I adopted Elliot on September 23, 2005. The only pet I’d had before him was a fish. But after caring for my friends’ cats, I wanted to adopt one of my own – someone to keep me company. I joked that I’d just started law school and I needed someone to love but I didn’t have time for a boyfriend. Elliot brought so much joy to my life.
Exactly a year later, I adopted Kennedy. I knew Elliot needed a friend for the times I was away – the long days at school and the many hospital visits. Kennedy and Elliot loved each other from the start and their love carried me through some very hard times.
Any pet owner knows how dear their pets are to them. Pets are part of the family.
And if you’re disabled – mentally or physically, you know just how much pets are part of your healthcare. They heal you, they keep you grounded, they are your constant companions willing to love you no matter what.
For patients, healthcare is about submitting.
Submitting claims, submitting our information those are at the beginning and end of each healthcare experience.
But it’s the submission required of patients between those administrative actions that is deeply damaging.
Anger in healthcare is often justified though usually disparaged. It is an emotion that is considered “negative” and “uncivil.” In a culture still stuck on positivity and “choosing to be happy” it’s an emotion that is shunned. People turn away from anger, afraid or disgusted by this unruly emotion. But perhaps we should turn into anger if we really want to change healthcare.
Anger is rightfully feared. Anger can lead to rage. Anger can hurt others. Anger can destroy.
Anger is often suppressed held in until it boils over, erupting and affecting everyone in its wake.
Anger is not pretty. Anger is hard to confront – no one wants to look directly at it.
Yet anger, like any emotion, needs to be expressed. Anger is real and valid just as sadness or happiness.
It is okay to be angry.
The excitement is palpable on conference floors with each booth touting the latest in innovation and the possibility of change, of making a real impact on healthcare abound. Companies angle for a good spot on in the expo hall, hoping that potential clients will walk by to listen to their pitch and find ways to connect and collaborate. Cards are exchanged and a new piece of swag is offered as conference goes go booth to booth.
Conference swag – everyone has something. Pens, stress balls, tshirts, bags, water bottles, notepads. The list goes on. Suitcases become overfull with all of these items collected, they are de rigueure . But do they really change healthcare? Do they really serve the company or the conference goer?
I think it’s time to change swag culture at conferences. It’s time to shake up the status quo and do something that can actually make a direct and meaningful impact on healthcare. It’s time to make healthcare conferences about the people not at the conferences, instead of the people lucky enough to be there. It’s time to give back instead of give away.
I have had many a terse conversation with doctors about the sacrifices they make to medicine – all they give to take care of patients. I recognize and respect their sacrifices, sacrifices of time, energy, mental health. The suicide rates for doctors is a crisis in itself as highlighted in this recent post in the Washington Post – “What I’ve learned from my tally of 757 doctor suicides.” The effects of the sacrifices that doctors make to the profession are real, but they aren’t the only ones who sacrifice.
There are ripple effects.
There are consequences for those immersed in medicine, surrounded by it. For those of us who are not doctors whose lives are intricately linked to this profession that can both hurt and heal in the most profound ways.
When I have these discussions with doctors, they have no idea what I’ve sacrificed. I haven’t been able to talk about it before in more than obscure references. But now I can and I think what I have might be worth saying both to understand my advocacy better and perhaps, even more importantly, help doctors gain another view of medicine – one that holds compassion for their lives and also asks for acknowledgment of ours.