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Patient Burnout

As I sit down to write this entry it's 4:42 in the morning. I've been up since around 2:30. Insomnia is nothing new to me, if anything it's odd for me to go more than a month without it. I guess that makes it a frenemy of sorts. Tonight I assume I woke up because I fell asleep in my almost-4 year old son's room because he wanted me to lay with him and I'm a sucker for that kind of thing.  Even though young children sleep like they're the star of a 1980s kung fu film.

I often scroll through Twitter when I'm up early and I keep seeing stories about the epidemic of physician burnout. I'm glad this is being talked about more openly. It's not a new concept, but the way our health care system is run these days seems to be piling on more and more mundane bullshit and physicians are growing weary, to put it mildly.  I even did a study in burnout in gastroenterology back in 2011 (Link: https://www.ncbi.nlm.nih.gov/pubmed/21336143) which is still my favorite title to a peer reviewed publication to date.

Caregivers of people who are ill or have dementia are another group we know often experience burnout. There are organizations devoted to helping them.

Today I want to talk about the other side of the coin:  Patient burnout.
Image Credit: Gemma Correll (https://www.gemmacorrell.com/)

I did a quick Pubmed search for "Patient Burnout" and got almost 4000 hits but from my lazy-ish scroll through these are all related to clinician burnout, not actual patients.

I switched to Google Scholar and found the same thing, with a few exceptions of studies done in the 1980s in diabetes, and orthodontia, of all things.

I had the honor and privilege of entering the medical system in May of 2002. Prior to this, I'd hit up the primary care doctor for what we'd call routine, minor issues. Except mononucleosis when was 23. THAT sucked.  Other than mono and a knee surgery in 9th grade, I was healthy. As a kid, my parents utilized our neighbor as our family MD.  He was actually a physician, not just some guy we lived next door to that offered medical advice.  He knew us well and treated everyone until he retired when I was in high school.

In 2002 I was diagnosed with Crohn's disease. It was an awful experience that still shakes my psyche to this day.  I won't get into all of it now, but it was an emotional roller coaster of a difficult to pinpoint case of small bowel, and now fistulizing, disease. Anti-TNF mediations, now a mainstay of IBD treatment, were scary and new and high risk. There was only 1 at the time, infliximab, and one in clinical trials - adalimumab, of which I participated in.

I rolled along, periodically screwing up my treatment by being non-adherent, then woke up in my 30s when I decided to have kids and recognized I probably should be more responsible about my health. But being more responsible required me to go to the doctor more. Don't get me wrong, I have a fantastic gastroenterologist whom I trust more than anyone. It's not about her. If anything, she is an antidote to my burnout.

In 2016 I added a diagnosis of eosinophilic esophagitis, an enormous stroke of irony from the universe considering I'd spent the prior 8 years studying the psychological impacts of EoE.  Seriously, I have 11 peer reviewed publications in EoE and 1 in press.  WTF, universe?

Now, in 2018, after delaying my first screening mammogram for almost 3 years I've been flagged for more testing due to 3 separate inconclusive findings. One of which involves a "mass like tissue with possible distortion." I also have dense breast tissue, which means seeing things on mammograms is harder. This finding probably means I'll need more frequent mammograms, at least for a while, to make sure it's not something more serious. Assuming it's not something more serious now.

Being a patient with chronic illness(es) is exhausting. And I'm burned out.

Is it all the appointments?  Since September 4th (Today is the 20th) I've had 4 appointments.  In the next 2 weeks I will have had 4 more. That's 8 visits in a month, for those who like math. In 2018, I've had 12 appointments so far. I'll probably hit 20 the way things are going. This doesn't include trips to the lab for blood draws.

Is it all the testing, which seems to loosely correlate with how I feel at best? To the point I've grown so cynical I expect tests to be abnormal when I feel fine and tests to be normal when I feel my worst?

Is it literally feeling like I'm losing my mind when tests are normal and I fear my doctor or friends or family won't believe me?

Is it ignoring symptoms, sometimes for years, using mental gymnastics to help me think it's probably nothing as to avoid the 2 points above?

Is it ignoring symptoms, or even putting off routine health maintenance, then discovering something really is wrong then kicking yourself for not doing something sooner?

Is it the daily pills, the weekly injections, the monthly or bi-monthly infusions?

Is it the side effects or the very real chance a medication that once worked will no longer work?

Is it the conflicting, sometimes polar opposite, opinions between doctors?

Is it the insurance denials and appeals?

Is it having to stay on top of companies who should maintain continuity of care, such as speciality pharmacies, with repeated phone calls to ensure your medication shows up on time?

Is it living in fear that politicians will erode away my health insurance coverage to the point I'll go bankrupt?

Is it dealing with cranky or unprofessional support staff who cause frustrations and delays or even obstruct access to my doctor?

Is it doing all of this while attempting to work full time, raise my kids, be a good spouse and partner in running a household, and be a devoted friend?

Yesterday when I got my test results I lost it. Not because I'm convinced I have cancer, the odds are quite low that I do. I think I would have handled this news better had I not been through the last 16 years with chronic illness.

I know that might sound backwards, like I should be a seasoned veteran of the system who knows how to navigate everything with my eyes closed.  And I will navigate this new problem. Because I don't have a choice.

But as I vented to my friend yesterday, who so kindly let me get a lot off my chest.  I'm tired.  I'm so very very tired. I'm a patient and I have burnout.

--T2

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