The Way to Wellness - Lessons Learned From Illness

Exploring the hard lessons of ICU burnout and wellness through an ICU physician's personal health journey, lessons that can help all who work within ICU, those who struggle with the spectre of future burnout, who are nearing this state for any reasons or who are trapped in feelings of depression, anxiety, stress and despair. 

The way up and the way down are the same way – Heraclitus Fragment 103 (D60)

Out of suffering have emerged the strongest souls, the most massive characters are seared with scars – Khalil Gibran

I still have flashbacks. “Laura, of course you know there are red flags", from my brilliant and kind family physician, followed by  his attempt to reassure "Try not to worry, I have never diagnosed one yet”. Transforming from a staff intensivist at the end of morning rounds, to a woman downing glass after glass of water, to a patient (though in hospital scrubs) walking very lonely, long, busy hallways filled with people to our imaging department, being stared at as I waited for the incredibly invasive transvaginal ultrasound, the face of the ultrasound technologist as she paused when imaging my right ovary, to her “I’ll be right back, please hold the probe right here”, waiting -invaded- in the quiet darkness of the exam room,  followed by “The radiologist will be right here to speak with you”…..  and my own thought as I laid on the stretcher “Funny, I never thought my story would end like this…”

There are other moments, too, perhaps even more surreal. Those that arose from being on call in the ICU and yet are navigating a new reality. I remember forcing myself to stay awake to make my midnight MRI appointment after being awake 36 hrs straight trying to save a life. I remember trying to provide some comfort during the desolation of another woman dying of metastatic breast cancer, crying at the news of its return, at the knowledge that she would only be a name to her infant grandchildren, a name without a persona, left me raw and cut sharp as a knife.

The first opinion was that the MRI suggested a benign lesion and not to worry… followed by the call 24 hours later: "Laura……on review …there are significant atypical features”.

These are some of the moments I still can’t leave behind. The memories that flash into my mind, unbidden and unexpected. Of course, as an ICU physician, I know how fast a serious and life-threatening illness can arise. I know all too well how lives can be forever altered or even come to a very abrupt and unexpected end. I know such illnesses play no favourites. I just never thought my story would include such an illness. Having a strong family history of cognitive decline and dementia, when I thought of my own eventual demise, I have always been worried about a long chronic illness that robs me of those I love and of who I am. The start of 2024 brought me face to face with the possibility that my life would be irrevocably changed and very abruptly shortened by ovarian cancer.

My goal is not to talk about all my experiences as a patient- some aspects of care went very well, others really not. Perhaps I will share more at some other time. What I want to focus on sharing now lies elsewhere. In the ICU, we live with the risk of burnout every day and the concept of wellness - as both prevention and cure. Burnout rates of over 40-50% have been reported after the COVID-19 pandemic among intensivists and ICU nurses (Macaron et al. 2023; Papazian et al. 2023) and 79% among respiratory therapists (Miller et al. 2022). A lot of research and literature (Klick et al. 2023; Kok et al. 2023; Leclercq and Hansez 2024; Miller et al. 2022) exists detailing root causes of burnout (exhaustion, workload, end-of-life care, moral distress, administrative burdens, ineffective leadership etc.)  and describes wellness interventions that may or may not be helpful, or even achievable (Klick et al. 2023; Leclercq and Hansez 2024; Sterckx et al. 2021). The wellness industry talks a lot about how it can help us, reframe us, recover us, and have us attain its seeming holy grail of resilience. Like many, in some studies up to 75% of us (Klick et al.2023), I have never found a lot of this useful – most of it being common sense yet often difficult to consistently achieve in the ICU setting. The risk of too many wellness programmes is giving rise to feelings that its participants, unable to find time for them, faced with their impersonalised recommendations that they don’t find helpful, and/or unable to use the tools they propose, are now left feeling they are failing at wellness too.

My goal here is to explore what my own 2024 journey taught me about wellness and, perhaps, how these lessons can help all who work within ICU, who struggle with the spectre of future burnout, who are nearing this state for any reasons or, who are trapped in its feelings of depression, anxiety, stress and despair. Here are my thoughts on the fundamentals of being well.

Understand and accept that not everything is within your control

Those of us who work in ICU are or should be well aware of our control issues. From the moment we begin to care for someone with a life-threatening illness, we assume control over every aspect of their body and often their mind. This control, as we all know, is achieved through sedation, ventilation, vasopressors, monitoring and frequent lab work. It is only when a person is fully under our control and responding to our attempts to stabilise their illness that we feel some degree of comfort, some degree of release from anxiety/stress, some ability to relax. Our control extends to insisting on and being assured of high-priority status for imaging, for OR or IR access if indicated. We are masters of calling every five minutes to see why the ICU bed is not available, why results, blood products and the like are not here, right now, and of managing any uncertainty with plans A through Z. Yet real life is not like this. Most people do not stand at their microwave and wonder why it takes so long for 30 seconds to count down. Sometimes, plans A, B, and C don't/can't exist.

As a person struggling with a potential life-altering, life-ending illness, I learned what it meant not to have control over when tests, appointments or surgery would be performed or when results would become available. I learned that I would have to adjust my own clinical practice and my personal life on short notice, that I would be required to take time off, time mandated by my surgeon, the extent of the operation, and the anticipated recovery. I would be required to make significant adjustments in my personal life responsibilities on short notice. This loss of control, frankly at a moment when I wanted to have such control more than anything, forced me to understand the real extent that control is a coping mechanism- for you can take the intensivist out of the ICU, it’s a lot harder to take the ICU out of the intensivist. These were not easy lessons.

In the ICU, it is impossible to deny that there are moments when control and timeframes, plans and alternatives are of utmost importance. Yet, these moments are not as prevalent as some of us perceive. To work as though they are, creates some of our excessive workload, stress, and anxiety and is frankly exhausting. Moreover, even in the ICU, there are many things and events that we can't control. There are uncertainties and periods of waiting that can seem interminable. We develop plans and contingency plans while waiting for results to become clearer. Devising plans to clarify uncertainties is another way of trying to control them. Yet, if we reach the point of trying to control the uncontrollable, it does not change its nature; it only adds to the stress, anxiety, and feelings of being overwhelmed. Understanding the difference between issues that do require control and those that don’t, understanding that you may not be able to control issues that should or would ideally be controllable, understanding that though we do not like it, uncertainties are part of life, understanding when and how to let go, are among some of the crucial steps to preventing burnout and staying well.

While trust is earned, to be well is to be reasonable

In clinical practice, the ICU team often plays the role of rescuer - from life-threatening illnesses, terrible adverse events, and iatrogenic harms. Seeing what can and what does go wrong may make it hard to trust anyone except oneself. Excessive work in the ICU comes from constantly checking everyone else's work, their assessments and their follow-up on clinical states, responses to treatment or success of resuscitation, no matter the hour of day or night. Again, this hypervigilance can contribute to excessive workload, exhaustion, stress, anxiety and then to burnout.  

There is no denying trust is earned. That trust can be bruised and lost. One of the poorly handled events in my journey was when I was informed in the preadmit clinic that my surgery was booked for five hours and that I may require admission when I had been given the impression that it would take only a couple of hours and it would be day surgery. It is hard for me to describe the impact of this statement from the anaesthetist even now. Raw fear – and perhaps an irrational sense that I had been lied to, that the likelihood of malignancy, downplayed in my surgical consult, had been misrepresented. You see, the plan to operate was at my request. I was told I could, as an alternative, proceed with quarterly imaging follow-up. My surgeon thought this was a reasonable option as their thought was that it was still most likely benign, atypical features or not. I considered it. Yet, an intensivist to the core, I knew myself well enough to know I could not function with the ongoing anxiety and fear of only knowing every three months whether the mass, already sizable, was growing. I could not cope with the what-ifs. Surgical resection and getting it out was really the only way forward. When I called the surgeon’s office to ask about this scheduled five hour OR, I was told by their administrator, "Well, it is surgery. Anything can happen”.

As an intensivist and a poet, I don't have the words, metaphors, or allegories to describe the emotional state this plummeted me into. Know that this was not the first major surgery I had undergone in my life either. I could have walked away from the OR plan. I didn't, though. Was my trust bruised? Yes, it was. Had I set an unreasonable standard for my trust to be earned? Perhaps I had. After all, it was not the surgeon who said those words. Even if it had been, people make mistakes in what they communicate and how they communicate. Such mistakes are generally fixable through open and sometimes mediated communication, which is ultimately what happened. An intensivist who only trusts when nothing goes wrong, when miscommunications/misinformation events are non-existent, who has some distorted sense of professional self that means only you are infallible or only you have the superhero/superhuman powers to catch every single mistake is unreasonable and frankly egotistical.  

To be well, ask yourself instead: What do I need to be able to trust in others? Am I being reasonable? Am I struggling with Obsessive Compulsive ICU Disorder (OCID)? When my trust is bruised and broken, because it will be, what do we need to move forward? To be well? To not burnout because of a false sense of need for hypervigilance? Answers will vary - this is certain. But the understanding should not. To be able to live in wellness is to have the ability to trust.

Never let people, challenges or circumstances rob you of who you are

Those of you who know me well know that I have never outwardly let others define me. What you don’t see, unless you are very close to me indeed, is the second-guessing, the self-doubt of whether what I have been projected to be has any merit. All of us have probably experienced this to some degree in either our personal or professional lives or both. And, if it’s not others that risk defining us, as healthcare workers, we have also witnessed how some people cope with illnesses by letting their illnesses define them and how some conversely refuse to accept any limits unless they have defined these themselves through trial and error.

What my journey taught me, though, was how incredibly easy it is for your sense of self to come under threat at a time when you need it to help you cope—which is really what the concept of wellness is fundamentally all about. From the moment I engaged with the healthcare system, I was called Ms. I have not been Ms since I was 22 years old. Astonishingly, two inoffensive little letters were all it took in my state of vulnerability to make me feel robbed of my self-identity. Silly, isn’t it? Perhaps, in some fairness, it was also the assumptions that went along with the Ms when information was being disclosed, risks and processes discussed. Perhaps it was the echoes of past assumptions that I was a nurse and not a physician because of my gender. And even though I corrected the Ms and explained I was a physician, part of me felt quite profoundly that if they saw me as a person, I shouldn’t have had to do so, because they would have gotten it right from the beginning, if only out of a common shared understanding of how much being a healthcare worker - physician or otherwise - comes to define who we are. Through my previous major surgeries, I can share that knowing who you are through life’s challenges is a very real shield against the depths of vulnerability. And being called Ms kept happening, over and over and over with every encounter, though many of these people knew who I was professionally.

Being a healthcare worker is not unique in terms of how a career, a role, or responsibilities have become integral to one's self-identity. Nor do I believe it is tenable to claim the loss of the understanding of self-identity in the face of illness is felt more deeply by healthcare workers. As we all know, identity can also be tied to performance, workload, how crises are handled and addressed, self-perception of coping abilities, research outputs and publications, relationships, our perceived resilience, etc. Some of these anchors may be appropriate; others may not. Adjustments may be required to be, stay, and regain wellness. The point is to take a moment to consider and understand your self-identity, what matters and why and what it means with respect to your wellness:

• Who are you? How do you define yourself and why?
• What events/issues/moments lived do you find difficult, rough, or challenging?
• What and when might you anticipate needing help?
• What kind of help (how would help) would be meaningful for you?
• Who would you be able to ask and accept help from?
• What characteristics of people would make asking for help easier for you?

Understand that “sometimes people leave you halfway through the woods, yet no one is alone”

It has been said that not everyone who enters your life comes to stay. Some people play their part then exit; stage left. Sometimes, this happens when you need them the most. Sometimes, it’s the who that surprises. Sometimes, it’s in the “others [who] will deceive you” (Sondheim 1986) in their offers of help/support, followed by their ghostly transformations when you are lost in the woods. Yet, Sondheim (1986) is also right in his lyrics: “Someone is on your side, no one is alone”. In my case, this happened when I shared with some what I was facing, what I needed to arrange with respect to my practice, what accommodations I needed professionally, and what I needed to get through. Some didn’t help even though they knew I needed urgent surgery if nothing else. Some offered care packages. I was asked to give my address so these could be sent. But I was not asked if any of these were what I needed, and there was a distinct sense that once the package was sent, they had fulfilled their duty in our relationship. Very few people asked what would help; very few people consistently reached out to ask how I was doing; most simply wanted to buy me stuff they wanted to send me. It became very clear, very quickly, that in a world in which the number of “likes” and “friends” matter, quality over quantity is important.

I needed to have someone to listen to my fears, anxieties, and stressors; in other words, someone to help me breathe, live one moment at a time and walk with me through the woods. Someone who understood that I didn’t want/could not handle every single topic of conversation being about me and how I was coping. I didn't need help with food, didn't need chocolates, wine or meaningless platitudes of “it will be OK”. I didn’t need people to do. I needed people to be. For many of you, this will not be surprising: a lot of criticism of physicians has centred on the tension between our actions and our presence. Actions are often easier than bearing witness, and, in fairness, we are taught to show we care by what we do, not by our simple presence. Yet I can attest to the fundamental truth that being present for someone who is struggling conveys a much deeper level of empathy and caring than doing, especially if the actions are done simply by rote.

The question is how do you, as the one in need of succour, handle these moments of action over presence when they reveal themselves as unhelpful? What if you feel you are struggling with any illness, with sadness, stress, flat-out burnout, and people turn away? Or seem to judge you as being weak or unfit to work in the ICU? It is so very easy to be bitter and resentful, to feel they are right in their assessments, that you are no good, useless to anyone. Yet such reactions are simply not true and only contribute to being unwell. It is better to accept people for who they show themselves to be and to understand what such responses tell you about how they are able to cope with such life events than see it as a reflection of how much they care about you or than see it as they don’t want to be there for you. While some people may not, most will simply be processing what is happening in their own way and in their own time. Many may even be wrestling with the anxiety that something similar could happen to them. In other words, their reaction may not be about you at all. To dwell on their reactions/ responses and/or to misunderstand them is to add to being unwell.

My frozen section revealed it was consistent with a rare tumour. It took thirty days for me to be told whether it was benign or malignant- of course, I researched what malignant would mean, and the results of my quest were frankly terrifying. The disequilibrium, sheer stress and anxiety of not knowing if I would live or die, of being unaware of what was my reality, were psychologically hell to navigate through. When I later found out this period could have been avoided and that the results had been available, though invisible to me through my patient portal, I can’t deny there was anger. There was anger. In time, I came to understand the importance of letting go and, in the words of the poet Derek Mahon’s 'Everything is Going to be All Right': "There is no need to go into all that. The lines flow from the hand unbidden and the hidden source is the watchful heart…. I lie in a riot of sunlight watching the day break and the clouds flying” (Mahon 2016).

In the end, my tumour was rare and benign, with another found on the contralateral ovary. For many in my life, including many on my healthcare team, the reaction was, "Well, that's great news- thank God that’s over!” Then they moved on as though nothing had happened. Yet, it was far from over for me. I had a wound infection to deal with for many more months. Even worse, and what I came to understand, due to my unpredictable and, at the time, incomprehensible floods of tears when telling others of my experience, was that psychologically, I was far from OK. I am forever grateful for those who didn’t leave even though they had their own challenges to get through and to those who entered when it was hard to see the light and with whom together, we all made “no one is alone” a living truth.

The lesson here is that wellness is not achieved by wishing it so. It is not something that returns after a traumatic experience, repetitive challenging moments lived, or tragedies survived, with the speed of the acute event itself. Achieving wellness takes time. It takes overcoming unpredictable, startling and bewildering symptoms of post-traumatic stress that arise uninvited and unwelcome, often just when you think you are fine. Getting and being well is a personal experience, a reflection, a journey and hard work that no one can do for you. Any approach to wellness, similar to that of any treatment, of healthcare itself, must be personalised. It takes grace, empathy, and honesty with yourself and others to understand what helps, what relaxes and renews, what doesn't, and where you are at. Though they can add to the exhaustion, stress and burnout, others can’t make you well- ultimately, wellness comes from inside, not out.

Wellness can be regained and maintained despite, and perhaps because, of the scars left behind

Many proponents of healthcare worker wellness suggest useful strategies such as reducing stress and workload, journaling, getting sleep, eating regularly, paying attention to work-life balance, telling people what you need, and urging organisations, e.g. hospitals, to take responsibility for their staff’s well-being (Klick et al. 2023; Leclercq and Hansez 2024; Sterckx et al.2021). Some, including I, have referenced Maslow’s hierarchy of needs to build organisational understanding (Hawryluck and Styra 2021). While various combinations of these suggestions are potentially helpful, after being through this past year, I think the first step is understanding the way down, in other words, what is causing your stress, anxiety, depression, and unwellness. Make as fulsome, honest, and comprehensive a list as you can with whatever insights you have of what is contributing to and driving you to feel mentally and physically unwell and burnt out.

To start the way back up, be clear that any plan starts with you. While it may include telling people what you need, people often do not really hear, nor do they really listen. Again, there may be empty promises; they may deceive or, worse, judge you (one would hope not, and yet…), or they may leave you partway through the woods. Instead, focus initially on understanding what you can do and what makes you feel happy and fulfilled. Start and grow from there. The most important lesson I have learned through all of this is to take time to think through where I want to go from here, what I want to accomplish in my life, who I want in it, why I need to let go of the rest and how to take the first steps to make these core goals a reality.

Medicine is described as both an art and a science. Many ascribe the art to being only the application of science, but I have always believed it’s a whole lot more. Art derives from the Latin word Ars which means skill or craft and is grounded in concepts of human creativity. As intensivists, we are humans, and as such, we all begin as artists in our own right, who have been transformed into professionals by the science we have and continue to study, learn and apply. Research into burnout has revealed that some of the ways in which we live in our science end with us wrestling with distress, the “burnt out ends of smoky days, the grimy scraps of withered leaves about [our] feet” (Eliot 1911).  To me, the fundamental issue is that we have lost our own personal art, “the music that is felt so deeply that it is not heard at all but [we] are the music” (Eliot 1941)— in other words, we have lost the music of being human and the understanding of how much this matters. The way forward is, therefore, very much the way back.

We all have scars, ones that are perhaps now fading fast yet still visible, the ones that can only be seen by a few. As I trace my own and carefully probe how they are healing (now without the floods of tears), the immortal words of T.S. Eliot (1942) come to mind:

What we call the beginning is often the end

And to make an end is to make a beginning

…..

Every phrase and every sentence is an end and a beginning,

Every poem is an epitaph.

Conflict of Interest

None.