Living with a chronic illness can be like a full-time job. There are appointments and treatments to schedule. Forms to fill out. Dealing with insurers. Arrangements for transportation. Plus, the demands of daily living.
Because rare and chronic illnesses are ongoing, burnout is a frequent concern, said Dr. Wolfram Schwarz, co-founder of Meduni.com, a German platform that provides evidence-based medical information.
“Even though there isn't an official diagnosis of chronic illness burnout, everyone who has known someone dealing with a chronic illness can understand that sometimes it's just too much to handle, especially in places where access to health care is expensive and rough,” he said. “People who have to go through everyday treatments, medicine, secondary effects, doctor appointments, medical debt, and life tasks can feel like they can't keep on doing the same. Sometimes, they feel like giving up.”
While it’s not an official diagnosis, it can lead to real problems like procrastinating about getting needed medical care, Dr. Schwarz said. Here are five ways to combat burnout:
1. Make time for self-care.
“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,” he said. “Seek help from family and friends. Or specialists if your mind battle is winning over you.”
2. Build a network of supportive people.
Your support network can help manage everyday tasks helps, said Kassondra Glenn, a licensed medical social worker in New York. Self-awareness also can make a difference.
“Pause right away if you notice signs of burnout, rather than pushing through,” she said.
3. Know the signs of burnout for people with chronic illness:
More intense and/or frequent symptoms
Increased overall fatigue
Withdrawal from relationships and commitments that they usually can maintain
4. Burnout isn’t the same as depression, but people who are depressed can be burned out.
Although they share some symptoms, burnout is different than depression, said Jodi Taub, a licensed clinical social worker in New York who specializes in counseling people with rare and autoimmune diseases.
“Chronic illness burnout is a stress response to the particular experience of being overwhelmed by the responsibilities of managing appointments, insurance, financial stressors, while juggling life responsibilities, all while experiencing physical discomfort,” she said. “Also, depression is a result of a mood disorder, which may require psychotropic medication to alleviate symptoms. Burnout may be relieved through lifestyle changes alone.”
5. Shift your focus to what is achievable.
- New symptoms
- More intense and/or frequent symptoms
- Increased overall fatigue
- Withdrawal from relationships and commitments that they usually can maintain.
Evaluate your routine, said 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.
Don’t dwell on activities or tasks that are out of reach, said Dr. Danielle Kelvas, a physician in Johnson City, Tennessee.
“If they see everything as a disadvantage, it's easy to become burnt out. The key to resilience and antidote to burnout is finding something they can be passionate about,” she said.