I’m tired. March is always difficult. Most of the worst things that have ever happened to me occurred between February 26th and March 28th of various years. Maybe it’s all the worst things, depending on how I feel about the ranking of events in my head. And my birthday is somewhere swirling around in the middle of that giant swamp of emotional baggage.
This year, I spent three days in a row in the same bathrobe. The doctor whose appointment broke the cycle told me that his office was an equal opportunity sartorial office and if I wanted to come in my bathrobe next time, that was fine. I wish he hadn’t told me that. It exponentially increases the risk that next year, it will be five days. At least I was still brushing my teeth.
Adding to all that was my realization that the work I have been doing might not be getting through, as indicated by the fact that I have to keep saying the same things at every webinar and conference I attend. This is not news to my fellow patient advocates. They have been doing the same for years and years longer than I have. To them, I am a relative newbie at five advocate years old. This year, it’s the cherry on top of my annual Month of Depression.
Perhaps I am naïve. I really feel that we are at the cusp of tangible, valuable change as the federal government pushes us slowly but inexorably toward a value-based (read: patient-centric, depending on how they ultimately define value) payment system, which will eventually bleed into the other aspects of healthcare. Where the money leads, the rest will follow.
With that in mind, I have joined several carefully selected advisory boards. They all do yeomen’s work that I believe will change the lives of patients who depend on their members for something beyond mere survival. Their ideas and approaches are insightful, the discussions nuanced. But a couple of misplaced words and the shocking acceptance of certain things as normal has given away that the professionals who are vital to the execution of these new approaches and solutions still haven’t done the *hardest* part. These brilliant, dedicated people are trying to find ways to change the mindset of an entire institutional system – an impossibly heavy lift. But I am finding that even the most enlightened sometimes haven’t changed their own mindset – an even heavier lift.
It's the little things – words that indicate a paternalistic approach; having patient stories on the docket, but as told by an intermediary, and not the patient; having a patient present but singling out only the professionals for praise for their contributions. I suspect these are all subconscious, both for the person who says them, and for the person who receives the message. These little indicators are likely not what is meant to be communicated. But they are communicated, and the little things can have an outsized impact. The impact of subconscious things often isn’t recognized by the sayer or the hearer until much later, if at all. It takes introspection and self-examination on an individual level to correct this.
Taking a good, hard, honest look at yourself for the purpose of understanding and intentionality is a difficult, sometimes painful exercise. I know. I did it. I looked at my own patterns of self-destructive behavior such as overeating (for Type 1 diabetics, overeating can mean an extended period of high blood sugars) and waking up for hours at a time in the middle of the night (lack of sleep also has a negative effect on blood sugar; everything stressful has a negative effect on blood sugar).
It took a long time to admit that the first one was self-destructive behavior even though eating negative feelings is one of the most common behaviors on the face of the planet. All I knew (or thought I knew) was that I did it and there was nothing I could do about it. But there was. Now I stop myself, just for a moment, to evaluate what I am feeling at the moment and make a conscious decision to go ahead with the self-destructive behavior or not. Not a comprehensive solution yet, but at least it is a conscious decision, and the power lies with me and not my subconscious anymore. That little shift took forever under the watchful treatment of a therapist who knew me inside and out. When the second issue rolled around, it was much easier for me to acknowledge that it was a fear/anxiety response to awful things I imagined might happen but hadn’t yet (aka, I am a catastrophizer, but can anyone really blame me for that?). For that one, I had to teach myself to remind myself that I was feeling fear and anxiety, and that nothing I imagined was going to happen that night or tomorrow or the day after that.
These were draining, exhausting processes, but I am much better equipped to approach these and other self-destructive behaviors that come up. Now I am asking all those brilliant, dedicated professionals who have discovered that some of the methods they were taught and things they thought are causing more harm than good. I’m asking them to take just a moment, that same moment I take to check myself, to examine the words they use and the presentations they give, and make sure they are communicating what they want to communicate. If you want patient involvement, this is how you build trust and communicate to us that you really do understand the value we bring, not just as subjects, but as people whose lives depend on you. That last part is the hardest, but I guarantee it will be worth it in the end.