This post is my response to Day 20 of The Health Activist Writer’s Month Challenge hosted by WeGo Health. Today’s prompt: Write about burnout. What does it feel like? What are your triggers?
When I hear the word ‘burnout’ in a health related sense, my mind automatically jumps to nurses and caregivers and the stress associated with providing care. It has been well documented that nurses who experience longer shifts, staffing shortages and inefficiently designed systems can quickly suffer from burnout. Additionally, relatives, spouses, family members, friends etc who take on the added caring role can encounter physical, financial, emotional and mental exhaustion. This is particularly the case if care is needed for a prolonged period of time and has to be performed in conjunction with other roles, such as holding a steady job.
Patients feel burnout too. Sometimes you just get tired of thinking about, managing, explaining and dealing with your condition. It takes all the same tolls – physically, financially, emotionally and mentally. To go into detail about the specifics of this would take days.
Writing about the concept of patient burnout is helping me to answer a question that has been nagging at me over the last few months. Let me explain…
In my experience I have found that a large portion of Patient and Family Advisors, Patient Advocates, Health Researchers, and other prominent representatives of the patient voice within health care are often caregivers, parents, children and relatives of patients. Generally they are not patients themselves. In fact some of the fiercest advocates I can think of are caregivers, not patients. There are, of course, exceptions. The health blogging community being one of the biggest where many patients have taken to writing about their experience with passion and even explicit, no holds bar detail. The Patients’ Association of Canada is another place where I have met several active health leaders with personal patient experience.
Still, the question remains in the back of my mind.. why don’t I encounter more patients involved in health research/policy/advocacy/advising/consulting etc?
Perhaps is it because people do not always reveal their ‘patient status’? So I am, in fact, meeting patients involved in these fields but it is not known to me? That is a definite possibility as I do not always wear my ‘patient status’ on my sleeve.
Another possibility is the extra amount of mental, emotional, physical and even financial strain individuals may go through when they use their patient expertise in the aforementioned fields. For most people, being a patient is a vulnerable time in their life and constantly thinking about, analyzing and sharing those moments can be exhausting. When you have a chronic illness your everyday life is already tied to the management of your condition, or at the very least your condition is in the back of your mind. This added stress may be a deterrent for getting into these health roles in the first place as the idea of combining your professional life with your personal troubles could be viewed as overwhelming and too much. For those who do, I can imagine how it could contribute to burnout quickly. Sometimes you just don’t want to think about it. It’s not simply connecting theoretical concepts, it’s personal.
I experienced this kind of patient burnout during my Masters and directly after finishing grad school. There were times when I just could not read one more word about Marfan syndrome or how diagnosed individuals felt about living with their condition. There were moments of great epiphanies and also of deep sadness as I connected what I was reading, along with theory to my own life. I kept a journal about my emotions, which was suggested to me by my reader, and it helped while I was working on my research. My committee was very supportive and it made it easier knowing they were sensitive to my journey.
During the course of writing for this blog or in the work I am doing now, I still experience feelings of burnout or at least the need for a break from analyzing the patient experience. I watch some crazy reality TV show or go out with friends and for a moment I can distract myself before I come back to tackle the next project. In the end I truly love what I do and feel like the quest for learning and sharing the patient experience will never stop for me. It is probably because my work is tied so closely to my personal life that I feel so passionate about it. It chose me.
I am curious if other patients who have let their illness experience spill over to their professional experience feel a similar way.