Burnout defies a simple definition but many of us know it when we see it – or feel it. Simply put, it’s a wearied state of functioning that follows an imbalance of too much of one activity.
It could be too much work or parenting or anything that we do in excess and leaves us feeling drained and overworked. Too much time spent managing a health condition can lead to medical burnout, or chronic illness burnout. Maybe you’re sick of being sick or sick of managing your health so you don’t get sick?
I can speak from experience here because I’m both a patient who lives with a primary immunodeficiency and a therapist who works with patients who are managing chronic conditions. Here’s what we keep up with: daily routines designed to keep us well, health insurance paperwork and medical appointments, including medical interventions that are uncomfortable or even painful. Anyone would feel frustrated.
It all takes a toll on mental health and ought to be addressed because medical burnout can lead to depression, anxiety and worse health care outcomes. Symptoms can include but are not limited to:
- Physical fatigue/exhaustion, sometimes experienced as a kind of “boredom.”
- Brain fog
- A lack of motivation
- Difficulty concentrating
- Feeling overwhelmed
Those symptoms can bring about counterproductive behaviors such as:
- Avoiding or skipping medical appointments and health care routines
- Delaying or avoiding medical case management, including paying bills, filling prescriptions, obtaining insurance reimbursement and scheduling appointments
Yes, everyone is managing something but chronic illness or medical burnout stands apart from other kinds of burnout like working too much or studying all night or long days taking care of children. With those investments, a person often gets a sense of accomplishment, recognition and acknowledgment.
The hard worker can take pride in a job well done and may earn a promotion. The dedicated student can point to a good grade on a test. And those who care for children are making important contributions to the well-being of a young person they get to watch grow and develop. Taking care of another human can be exhausting, but it also can feel gratifying and provide a sense of purpose.
Fatigue from medical burnout does not offer such internal or external rewards. You’re just trying to keep the lid on a health problem. Sometimes a treatment must be endured without much reward other than knowing you took the necessary steps to keep an illness from getting worse or spiraling out of control. But you can learn to insert your own rewards in the routine. More on that in the tip list below.
A conventionally healthy, able-bodied person may overlook all the energy you’re spending on medical care. They can’t relate to the time investment and emotional investment. They often do not recognize the amount of sophistication, determination and relationship management that goes into navigating a rare, chronic disease. You might feel especially burned out if someone offers unsolicited advice about your health care or questions your decisions. Their lack of understanding can leave you feeling misunderstood.
Here are my suggestions for addressing burnout, plus a few additional insights from other experts:
- Prioritize your most pressing health care needs: You probably have heard the spoon analogy about chronic illness. The idea is that a patient has a finite amount of energy each day (a certain number of spoons) and they must spend them wisely. Choose to spend your limited energy on the most pressing health tasks, appointments or procedures. It’s OK to say no to other commitments and temporarily put other responsibilities – like getting your car serviced – on the back burner.
- Prepare for uncomfortable procedures: No one enjoys being poked or prodded, and the stress it causes. Try scheduling your appointment on a day that you know that your responsibilities are lighter, so you have time to recover. If you are a caregiver of a child, ask child life specialists for help with infusions and other procedures involving needles.
- Create your own reward system: Managing a chronic health care condition is difficult. Pain sensors can cause cortisol levels to increase, but rewards can cause stress hormones to decrease. Make a habit out of giving yourself rewards, treats you know you’ll enjoy. Take a walk, enjoy a favorite meal or another activity that brings you satisfaction and a sense of well-being. You deserve it.
“Know that feeling exhausted is normal and it's OK if you feel like you deserve to rest. Have days for yourself and pamper yourself with things you like and make you feel optimistic about life,” said Dr. Wolfram Schwarz, co-founder of Meduni.com, a German platform that provides evidence-based medical information.
- Invite your physician into the conversation: Like all relationships, the doctor-patient relationship takes effort from both sides. When you have a solid partnership, you can talk with your doctor when you feel overwhelmed by your health care regimen. Maybe you’re avoiding taking a prescribed medicine or learning how to use a medical device. Open up a dialogue and ask for all options, especially those that will lighten your load.
Shift your focus to what’s achievable, says Dr. Moshe Lewis, chief of Physical Medicine and Rehabilitation at California Pacific Medical Center. Are there ways you can streamline your daily care? Are you trying to do too much?
“Place limits on physical activities that drain energy unnecessarily,” he said.
“Pause right away if you notice signs of burnout, rather than pushing through,” said Kassondra Glenn, a licensed medical social worker in New York.
Don’t dwell on activities or tasks that are out of reach, said Dr. Danielle Kelvas, a physician in Johnson City, Tennessee. Fight burnout and discover resilience by finding something you’re passionate about, she said.
- Cultivate your community: Living with a chronic illness can be isolating, especially when illness or the demands of managing your complex medical condition take so much of your time. Research shows that strong social connections is the largest predictor of improved physical and mental health.
Prioritize your community of family and friends. Set aside time for them and ask for accommodations, if needed, so that you can see them. Learn more about asking for help and making the most of your relationships:
