Martine Ehrenclou, M.A., is a patient advocate and award-winning author of The Take-Charge Patient. Learn more about Martine and her work at thetakechargepatient.com.
Sometimes having a chronic medical condition or illness can lead to patient burnout. Whether you’re coming to terms with the management of your condition or chasing down treatment plans, burnout can affect anyone.
There is something you can do.
What is patient burnout?
Patient burnout is a psychological state, which includes feeling physically and emotionally depleted by the ongoing maintenance of your medical condition. You might feel worn out or apathetic toward self-care. Maybe you’re putting off doctor’s appointments, or isolating yourself from others and resisting involvement in activities you used to enjoy. Part of patient burnout can also include feeling a lack of personal self-efficacy, struggling with how your condition has affected your sense of personal accomplishment.
Sharon Bosch experienced patient burnout when she first received her diagnosis of multiple sclerosis (MS). During the period when she and her doctors were trying to figure out which medications worked for her, she said, “I was trying to figure out the new normal for me.” She admitted going through a grieving period for her old self.
“You have to go through the process, then you come to acceptance and realization of what you may have been able to do pre-diagnosis,” Sharon said. “Now, I do what I need to but simply do it differently.”
Eventually she learned strategies to shift her attention away from her symptoms and focus on self-care and giving back to the community. She said, “I have MS, but it doesn’t have me.”
Jewels Doskicz has type 1 diabetes and rheumatoid arthritis (RA). She, too, experienced a version of burnout or sadness when she received her diagnoses. “I am such an active person, and when I learned that I could not continue with long-distance running, I was devastated,” she said.
Once she allowed herself to process the reality of her conditions, she then discovered that having a road bike would fill some of that void. Jewels also turned to volunteering in her community as a way to give back and also to transform her conditions into something positive for herself and others.
I too have experienced patient burnout, and it was not fun. During my 16-month chronic pain condition, I had seen 11 physicians of differing specialties in search of an accurate diagnosis. Each doctor offered his/her own diagnosis and treatment plan, which included 15 tests and procedures I didn’t need and a slew of medications to treat the 10 misdiagnoses I didn’t have. There were times during that period when I felt like giving up and when I swore I’d never see another doctor. The ongoing, severe, lower abdominal pain drove me into mindless sitcoms and dark chocolate.
Treating the emotional side of chronic conditions
For patients with chronic illnesses or conditions that may last a lifetime, resiliency may not come easily. No wonder. According to The Western Journal of Medicine, medical providers often overlook the emotional component of chronic conditions. They frequently don’t address that patients often have to adjust their lifestyles, their beliefs, and sometimes their jobs. Many patients grieve about their predicament before adjusting to it. Others can experience prolonged stress, depression, and anxiety.
To combat patient burnout, Sharon got active in the MS community and founded her own organization to provide information on MS, help others, and to raise money to find a cure for the disease. She also used exercise (walking), guided imagery, and listening to music to give herself mental breaks from her condition and encourage a positive state of mind.
Jewels embraced yoga to reverse intermittent bouts of hopelessness and to train her mind to focus on the present instead of worrying about what might lie ahead. She also volunteers in diabetes and RA communities and started a blog on diabetes to help others. Both women decided that they were going to be as active as they could despite the symptoms they suffered.
Many patients who have successfully battled patient burnout seem to share a similar process. They first move through a period of grieving, then arrive at acceptance of their diagnoses, and then reinvent some aspect of their lives to accommodate their conditions but also to create a new facet of their presence in the world. Many found ways to distract themselves from symptoms so they didn’t feel deluged by them. Some engaged in new forms of exercise, relaxation techniques, new employment, meditation, and activities with family and friends.
Many patients who overcome burnout share a drive to volunteer for causes related to their diseases or conditions. Giving back seems to allow them to move beyond feeling helpless to what is happening with their bodies. Many start their own support groups, and create organizations or sources of inspiration for others who share the same diseases/conditions.
Use personal control to beat burnout
In my books I write about personal control as an essential component to avoid feeling like a victim to the healthcare system. It works in a similar way with a chronic disease or condition. If you can get on top of it in whatever form works for you, you might experience an increased sense of mastery over your condition, which in turn can zap its power over you.
I did that myself with my chronic pain condition. I enlisted a good friend as my advocate when I started experiencing burnout, and with her help, I took control of my diagnosis journey with research, organization and brainstorming my next steps. My research led me to my own diagnosis and the surgeon/hernia specialist who healed me. That in itself was empowering.
If you’re experiencing patient burnout, tapping into empowerment is key. Finding ways to take back some control can breathe life into hope and a positive outlook. However, creating an organization, blog, or support group might not be for you. You can begin with small steps, whether that’s volunteering for one hour or walking one block with a friend who has the same diagnosis and imparting what you have learned so far. It doesn’t have to be big.
Sometimes patient burnout can lead to depression. If you feel consistent sadness, hopelessness, irritability or frustration, loss of interest or pleasure in normal activities, dramatic changes in sleep or weight, feelings of worthlessness or guilt, talk to your doctor.