Let’s Talk About Perfect Patient Burnout
I can’t recall what year in my lupus diagnosis I began feeling this way. It seemed the pressure was mounting with each specialist visit as more and more medication was prescribed for this and that. Having to remember what time of the day and what ways to take several pills was even more daunting – not to mention the laundry list of foods I could suddenly no longer eat.
I feel like I am climbing a proverbial ladder to some “place,” but one slip-up lands me back at the bottom.
I had a hard time describing the feeling, until recently when I had an "ah-ha" moment. I was scrolling through Instagram, reading a post from Daniel Newman, a diabetes advocate, when I saw the words “perfect patient burnout.” So, so accurate!
For me, burnout looks like a funky mood, or getting lax and missing a pill or two. Dragging to do my dialysis – that I make sure to complete every night. Every. Night. It is mentally and emotionally draining.
A better approach from doctors
I wanted to learn more, but a quick Google search on "perfect patient burnout" pulled up articles on – get this – physician burnout. Ha! interestingly enough, Daniel’s post mentioned that our doctors play a part in creating the stress of patient burnout. How? There is such an emphasis on the patient being meticulous in taking care of themselves, there’s no room for error – or being human.
One missed dose, or eating food not on the “good list”, and you could suffer terrible complications or suffer a setback. This isn’t a dump on doctors. Physician burnout is real and so is lack of patient adherence. Physicians have an amazingly tough job in helping patients stay consistent due to many factors – and a lot of time patients need to hear the hard reality of not sticking to their treatment plans. The issue is there doesn’t seem to be any gray area or room to be human. Receiving a lupus diagnosis is earth-shattering. I can’t begin to tell you some of the callus ways lupus has been explained to new patients. The bottom line, more compassion is needed to help patients understand the consequences of not sticking to their plans, and empathy is needed in understanding the difficulty in being diagnosed and learning the ins and outs of their condition.
The patient’s responsibility: self-care and self-compassion
Even with more than a decade of being a lupus patient under my belt, I still forget to take my meds sometimes, or just flat out get lazy. These are the moments that rebellion and the rush of the day win. For years, I’d berate myself, giving myself harsh talks about “straightening up” in my healthcare. It only leaves me feeling shameful. Now, I’m working on flipping my perspective. I know I have to look at sticking to my treatment plan as the ultimate self-care. And, on those not-so-good days, because they will come, I’m learning self-compassion. Self-compassion is defined as extending compassion to one’s self in instances of perceived inadequacy, failure, or general suffering, according to Dr. Kristen Neff, a self-compassion researcher, author, and teacher.1 I found that both, self-care and self-compassion, take work, but the result is so worth it. You feel in control of your healthcare while embracing your humanity.
The pressures of living well with lupus are constantly bombarding us patients. A change in perspective from the healthcare professionals that work with us and growth in self-care and self-compassion from the patient themselves will help patients have better control of their lives.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?