If you’re a patient with a chronic medical condition or serious illness, management of your symptoms and ongoing treatment might feel like a stressful job—one that you didn’t sign up for. Maybe you’re depleted or apathetic toward your care. Perhaps you’re putting off seeing your doctors or are resisting involvement in activities you used to enjoy. You might be experiencing patient burnout.
During my 16-month long, severe pain condition, I experienced burn out too. Not just because I received ten misdiagnoses from eleven physicians, or because of the 15 procedures and tests that did not lead to an accurate diagnosis. The lower abdominal pain I experienced limited my energy and ability to partake in my family and social activities, in my work and beloved dance classes. By month ten I was burned out and a bit hopeless about ever getting out of pain.
Patient burnout is a psychological condition that includes feeling physically and emotionally depleted by the ongoing maintenance of your medical condition. 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. 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.
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. 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.” 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.
For patients with chronic illnesses or conditions that might last a lifetime, resiliency may not come easily. 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 became active in the MS community and founded her own organization to provide information on MS 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.
In my books, The Take-Charge Patient and Critical Conditions, 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 can help reduce the feeling that it has 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 positive outlook. You can begin with small steps, whether that’s volunteering for one hour for an organization that fits your illness/condition 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.
Strategies to combat patient burnout:
- Continue being as active as you can in your personal life. It is important to maintain your identity separate from your illness/condition.
- Build support systems such as in-person or online support groups where you can discuss your medical condition and connect with people who truly understand. Look for groups that are solution seeking rather than groups that just air grievances. The latter is important but can also increase a sense of helplessness.
- Prioritize tasks and delegate to others. If you are experiencing burnout, consider asking a loved one to drive you to a doctor’s appointment or help you organize your medications, or assist with food preparation and planning.
- Enlist an advocate if you aren’t feeling well. Ask a loved one to go with you to medical appointments and take notes, help you prepare a list of questions, write down the answers, and serve as a second set of eyes and ears.
- Find things that nurture you such as massage, writing in a journal, painting or sewing. Consider listening to music and engaging in activities with family and friends. Reading, meditation and some forms of yoga can replenish the spirit. Engaging in a new activity that doesn’t focus on your condition can help expand your world beyond your diagnosis.
- Set up a reward system for yourself such as planning a fun activity as a reward for reaching each new goal.
- Set limits on how much you do for others.
- Seek support from a health psychologist or educator/therapist for your condition. For example, your health plan might have a list of diabetes educators or health psychologists. Find someone who understands your illness/condition, not someone you have to educate.
- Remember that you don’t have to be perfect. If you have a chronic medical condition or illness, keep in mind that you don’t have to do everything perfectly all the time. Try being in the moment and do your best just for today. Perfection is not realistic for anyone and it can interfere with self-confidence and hope.
- Take back some control. Try creating something new that relates to your disease that allows you to give to others. Whether that’s volunteering or taking what you’ve learned about your illness/condition and teaching it to someone else, do whatever you can to transform some aspect of your disease/condition into a positive contribution.
Sometimes patient burnout can lead to depression. If you feel consistent sadness, hopelessness, irritability or frustration, or feelings of worthlessness or guilt, talk to your doctor.