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 A pencil to a piece of paper with the word "Why?" written on itwithin 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.

A line indicating highs and lowsI 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.

Advertisements

4 thoughts on “Burnout: when the personal turns professional

  1. Interesting point Sarah. I agree that caregiver stress is huge in those outside of the healthcare field, but I had never really stopped to think of how much caregiver stress is put on the pt themselves in just explaining themselves. I often find this difficult myself, as a health professional, I’m privy to more information on medications being researched and new methods of treatment. I can put a lot of stress on myself my advocating for my wants and needs from Dr’s, especially when it becomes a instance of power struggles. Perhaps more health care professionals need to take a look at the idea of burnout from a patient perspective.

    I also agree that some of the biggest advocates are immediate caregivers. This was my mother in my childhood and she is now doing this for her eldering parents, in addition she is also a health care professional, so caregiver stress is huge for her. Similar to you she kept a journal of her thoughts and emotions to keep track, and found this quite therapeutic.

    Great insights :)

  2. Thank you for your comments Amanda :) It must be very interesting (and frustrating) for you coming from both perspectives, as a health professional and a person seeking advice from your doctor. It’s amazing how advocating for yourself can sound so simple in theory but can be so difficult in reality. I agree that patient burnout should be of interest to health professionals because acknowledging it can help strengthen doctor-patient relationships. It is nice to hear that the journal helped your Mom as well, I think it is a really good tool for getting out the stress. Being a caregiver at work and at home is a lot to deal with. I hope she is doing well :)

  3. Hello Sarah – I’m late to the party here, but have just discovered this interesting post. It reminded me of what Dr. Victor Montori and his Mayo Clinic-based team are working on – the concept of “Minimally Disruptive Medicine” and specifically what they call “the burden of treatment” that many patients live with on a daily basis. This reality is particularly common in those diagnosed with more than one chronic illness (i.e. those who may not ever have the “professional experience” of patient advocacy because they are simply too sick to work). More on this at http://myheartsisters.org/2013/02/16/living-with-the-burden-of-treatment/

    Because I regularly hear from these people through my blog (and am one myself), it’s often occurred to me that there are really at least two basic types of “patients” – although most people who write about us lump us all together as if there were really only one amorphous blob out there called “patients”. There are those who are diagnosed, treated, able to resume virtually all aspects of their pre-diagnosis life despite coping with a number of physical symptoms or the side effects of that treatment (for example, they are capable of going back to work, having an active social life, travel, etc). Then there are others who are diagnosed with one, then another, sometimes more chronic and progressive illnesses. These are the ones Dr. Montori describes as struggling daily with this “burden of treatment” – and more often than health care professionals realize, this type of patient may not have the capacity to cope with this burden.

    1. Hi Carolyn, thanks for the comment and I have really enjoyed reading Heart Sisters.

      You make a good point about coping with illness being a major barrier for professional advocacy. Thankfully the Internet has made it easier for us to reach out to one another.

      I don’t think I would fit into either of those two patient categories though, but rather I straddle the two (which has left me feeling a bit left out of both camps at times). I manage my chronic illness (a connective tissue disorder, as the major one) and disability (low vision) daily but am still able to work with some modifications. I don’t have a prediagnosis life to go back to, as I’ve always lived with these conditions, so I’m not sure what a life without management would look like for me.

      Although I agree that is important to not lump all “patients” together in one homogeneous group, I also have issues with categorizing as well because there are so many patients who move between.

      That is not to say that it is important to recognize the “burden of treatment” and our ability to cope with managing illness. I think it would be really interesting to explore what this burden looks like for different patients.. A lot to consider here! Thanks again for your thoughts.

I would love to hear from you!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s