by Katarina Zulak
Looking back on a year of quarantining, I had the surprising realization that fewer medical appointments and procedures had improved my quality of life significantly. It turns out that having quarterly nerve block surgeries and knee injections, biweekly physiotherapy and acupuncture appointments, and semi-regular checkups with my pain specialist, GP, OB/GYN, and naturopath were more overwhelming than they were healing! In addition, the daily burden of my self-management treatment regimen, which included supplements, stretching and strengthening exercises, keeping a pain diary, diet restrictions, and meditation, was another source of stress. Combined, the medical interventions and self-management techniques had caused what I call “treatment burnout.”
As a patient, I have intensively researched what steps I can take at home to manage my symptoms. Over time, my to-do list ballooned to 25 items, ranging from meditation to medication. This proved to be unsustainable. I found myself feeling guilty and stressed at the number of things left undone at the end of each day. I would wonder if a flare-up was caused by the fact that I’d forgotten to take my omega-3 supplement or because I had broken my diet and eaten gluten. Ultimately, I realized the to-do list had become part of the problem instead of the solution.
What Is Treatment Burnout?
Burnout is considered an occupational condition, so it may seem strange to apply it to the experience of being a patient. In my opinion, being a patient is a full-time job, and therefore, burnout is as applicable to us as it is to workers and caregivers. The work of being a patient includes medical research and reporting (pain diaries, research notes, and question lists), attending meetings (appointments), health insurance or disability claims, scheduling appointments and pacing activities, personal training exercises, diet/nutrition preparation, etc.
Burnout was first defined as the extinction of motivation or incentive, particularly when your dedication to a cause, job, or relationship doesn’t achieve the results you worked so hard towards. It is characterized by:
- emotional exhaustion and feeling numb or distant from your patient work
- cynicism and pessimism dominate your thinking about patient work
- feelings of reduced capability to effect change in your condition
- escapist fantasies about moving away or desire “to get off this train”
- obsessing over patient work frustrations
In contrast, a motivated patient is ready and willing to try prescribed treatments or adopt lifestyle changes and self-management tools. You feel hopeful that these measures will be helpful, even if you know it will be a trial-and-error process to find what works for you. If you are struggling to generate the will to attend appointments, go to the pharmacy, or do your stretching, then you might have treatment burnout.
The Hidden Toll of Medical Interventions
A friend recently told me they had decided to forgo a medical intervention, even though it could provide them with temporary pain relief, because the stress of doing the procedure outweighed the possible benefits. This decision probably would not make sense to someone who doesn’t have a health condition. Why wouldn’t you take advantage of an intervention that offers pain relief? However, this pro/con analysis ignores the very real mental, emotional, and physical cons of interacting with the medical system. It is often exhausting, painful, and anxiety-provoking to undergo medical procedures.
This has been true in my own experience. Last year, I received a nerve-block to relieve my SI joint pain. However, having the needle inserted into the joint felt like 11 out of 10 on the pain scale. When I yelled out and cried, the specialist told me he “wasn’t even doing anything” and that I was being “too emotional.” Sadly, many patients have experienced a variation of this story. In fact, some patients have found their medical interventions so intense that they have developed medical PTSD (post-traumatic stress disorder). However, in the medical literature, you will find many studies about burnout among healthcare professionals and caregivers, but it’s almost impossible to find research into patient burnout.
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What is the difference between depression and burnout?
Depression and burnout are different conditions, although burnout may increase the likelihood of experiencing depression down the road. While certain symptoms such as irritability, negativity, and lethargy are common to both, depression may also include pervasive sadness, low self-esteem, and hopelessness.
Burnout is related directly to work and often improves during vacation or extended respite from work. In contrast, depression permeates all aspects of daily life and isn’t alleviated by time away from work. In the context of being a patient, burnout may apply when the source of your feelings is your experience with the medical system or an overwhelming number of self-management strategies. However, if your feelings extend beyond your patient responsibilities to all parts of your life, then it might be time to talk to a mental health care provider or doctor to talk about depression.
How can I address treatment burnout?
Patients Need Respite Too: Caregivers are often advised to take respite breaks to maintain their mental health. But who thinks of recommending this for patients?! Mental health is part of your overall health and deserves to be considered alongside other health issues. For example, one chronic warrior recently told me her GP had arranged a “treatment vacation” during the summer months for non-essential treatments. It’s also okay to say no to new treatments if you are experiencing patient burnout.
Review Your Treatments: As a patient, it’s not possible to quit your stressful job. But it is possible to review your current medical treatments with your doctor or discuss scheduling a respite. I recently spoke with my GP about my overwhelming number of appointments, and we came up with a plan to strategically manage these by making some appointments virtual, spacing others, and putting a few on hold, so that I only have one appointment per week. For example, I have halted medical procedures like nerve blocks, spaced physiotherapy appointments to once a month, stopped further referrals to specialists, and arranged to have check-ups by phone.
Self-Compassion – treating yourself like you would treat a best friend
Self-Compassion vs. Self-care: Acts of self-care can sometimes feel like additional to-dos that only increase the burden of your daily treatment regimens. Candle-lit bubble baths aren’t helpful when they feel like a chore that drains your precious reserves of energy. In this case, self-compassion, which means treating yourself like you would treat a best friend, is more effective. Give yourself a break. Treat yourself gently. Do what intuitively feels right to you. Researching a new supplement or medical device when you have treatment burnout may only cause more stress, especially if they don’t work. Sometimes the most effective thing you can do for your health is to stop and just be for a while, instead of always doing another treatment.
Katarina Zulak is a health blogger, health writer and all-around health nerd. Nine years ago, Katarina was diagnosed with fibromyalgia and endometriosis. On her health journey, she has learned the power of self-compassion and self-care skills to improve her health and wellbeing. As a writer, she is excited to educate and encourage others to be skillfully well, even if they have a chronic condition.
Katarina lives with her husband and their cat Sarah. She loves learning, being outside, reading, gardening, and catching up with friends over a steaming mug of tea.
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