Confronting the Burnout of Coordinating Care

With the way American healthcare systems function, patients often get caught in the middle. Those of us with health conditions like chronic hives often get pulled from one place to another. We see our healthcare providers and insurance companies battle it out.

More frequently, we face these insurance companies with no plan, no knowledge of their loopholes and surprise denials, and nobody but ourselves to hold our ground. It’s no wonder many of us suffer from burnout from making both the big and infuriatingly small decisions we face.

The struggle of information chasing

Not only do we battle against insurance companies, but we are often butting heads with our medical providers or their organizations. If the pharmacy doesn’t receive a prescription, or a doctor doesn’t get notes from a specialist we saw, we have to take the time to chase down that information.

With each additional diagnosis and specialist seen, this information-chasing takes more and more time. When this is combined with the necessity to go to doctor appointments, deal with prescriptions, call the insurance company to resolve billing errors, and simply take care of ourselves, it becomes a full-time job.

For those of us still working, we have to somehow fit in our healthcare needs between work, family, and sleep. For those of us who are disabled or unable to work, it’s still a full-time job, often combined with the layers of multiple chronic conditions.

Finding validation in the system

How do we address our medical needs without burnout? Unfortunately, sometimes it can’t be avoided. But sometimes, we are able to implement practices to help us maintain our sanity. I’ve lived through burnout—professionally, personally, and medically. And what works for me to prevent burnout doesn’t work for everyone.

I’d like to share a few tips, though, that may be beneficial to some of you. First, though, I’d like to validate your frustrations and anxieties. Oftentimes, if we don’t advocate for ourselves, nobody is going to do it for us. The system continues on whether we get what we need or not. That is terribly unfortunate. Know that you are seen and heard by your fellow "spoonies" as you muster up the energy to protect yourself.

Tips for managing burnout

Take breaks in between tasks

As we face burnout, I’d recommend a few things. First, take time in between tasks. Some of us procrastinate calling our insurance company, doctor's office, or pharmacy because it takes so much out of us. Often, we end up trying to fit all those tasks into one compressed time period. To this, I say, “Divide and conquer!” Truly, if we steadily approach these challenges one at a time, despite a long list of “to-dos,” we will feel more confident and less guilty about taking our time. Make a checklist, and work through it one check at a time.

Find a support person

Second, I’d recommend having a support person or two that you can vent to. They don’t even need to know all the details of your healthcare journey. What they DO need to display is kindness, compassion, honesty, and an ability to listen and validate your feelings and experiences. Often, when we talk through our problems or frustrations, it’s easier to come up with a solution, or at least feel more peace about a lack of a solution.

Know your rights

Third, educate yourself. Know the system that you are up against. Know your rights as a patient. And through these, feel confident if you need to challenge an outcome, medical bill, or an inappropriate diagnosis.

Build a team you can trust

My final word of advice to prevent burnout is to find a team of healthcare providers you can trust. This typically doesn’t happen immediately. It took me about 4 years to surround myself with doctors and nurses that I trust will be honest and diligent with my care. But it’s not perfect.

I’m seeking a second opinion from a specialist, after my first provider recommended a surgery I am not comfortable with. Depending on where you live, and your insurance, this may be very possible, or nearly impossible. I want to validate those of you who don’t have many options, and end up going to basically the least horrible of your options. It’s an ongoing, revolving door of providers and challenges when it comes to chronic hives.

If you’re able to find a system to less painfully accomplish tasks, find your people, educate yourself, and find trustworthy providers, you may be able to develop a routine to prevent the downward spiral of burnout. It’s not magic, but finding an approach and system that works for you may help.