Why Hard Work Doesn’t Pay Off in Chronic Illness: How to Stop Pushing Through Your Fatigue and Give Yourself Permission to Rest

Why Hard Work Doesn't Pay Off in Chronic Illness How to Stop Pushing Through Your Fatigue and Give Yourself Permission to Rest

I’ve never been a big fan of napping. I was that overexcited kid, running around, yelling “No! I am not tired!” Moving on to the next thing I want to do has always seemed more interesting to me than stopping and sleeping. You can imagine how well that impulse has (not) translated into living with fibromyalgia. The metaphor I like to use is putting a racing car engine in a beat-up old car – my mind always wants to go faster than my body can keep up with. But it’s not just curiosity that pulls me forward. I also put a lot of pressure myself to push through, to keep working until it’s all done.

I’ve learned that always pushing forwards is toxic for my body. I’ve also learned that the impulse to soldier on isn’t a personal failing. Believing that “hard work pays off” is a social value, something we are all taught growing up.  We attribute positive character traits to people who spend long hours at work, without ever making time for themselves. We describe them as being committed, determined, effective, ambitious, responsible, and upstanding, rather than just calling them workaholics. The flipside – laziness – is a cardinal sin in our productivity-obsessed culture. But encouraging this imbalance between activity and relaxation serves to support unhealthy attitudes and behaviour around work.

I’m far from the first person to point this out. In recent years there’s been a movement to prioritize emotional wellbeing. You hear a lot about self-care, emotional balance, burnout, stress management, mindfulness, and disconnecting from social media, among other things. Psychologist Guy Winch, in his TED talk How to Practice Emotional First Aid, explains our favouritism towards physical well-being over emotional well-being. He points out that, while we learn from a young age to put a Band-Aid on physical injury, we don’t learn how to treat our psychological injuries, like sadness, loneliness, or anxiety. Psychological pain has a significant impact on the body’s state of health, and increases the risk of chronic disease. The mind and the body are interconnected, and what affects one has an impact on the other.

I think chronic illness magnifies the mind-body connection. Living in a state of constant physical fatigue has significant cognitive and psychological consequences. Brain fog, frustration, anxiety, a sense of helplessness, and many other responses are common among people living with illnesses involving chronic fatigue. Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center in Baltimore, says that “The emotional impact of a diagnosis of chronic fatigue syndrome is different for each person, but it relates to the loss of the ability to do the things you were good at before” (quoted in Everyday Health).

Put another way, fatigue causes people living with conditions like fibromyalgia, to experience multiple and complicated losses. These losses occur in areas that affect our sense of self-identity, like career, friendships, hobbies, parenting, and daily functioning. Kate Jackson (2014) calls them ‘infinite losses’ because they are not time-limited – instead they are unending, which makes them harder to resolve.

So, you might be asking, what does this have to do with taking a nap? For people who don’t live with chronic illness, resting might be a straightforward solution to fatigue. A physical solution to a physical problem. Even for healthy people, however, I doubt that’s always true. Call it stress, emotional overload, or burnout, the impulse to push through when you actually should stop and recover can result in significant psychological and physical problems. Our general preoccupation with work and productivity encourages unhelpful mindsets like perfectionism, shame, anxiety, guilt, and low self-esteem. In turn, these feelings and beliefs can cause us to double down and work even harder in order to measure up (Psychology Today). It’s very difficult to stop and listen to what your mind or body need when you’ve learned to routinely override those signals.

I’ve read countless tweets and blogs from people living with chronic illness who are frustrated with themselves for overdoing it on a good day and causing a flare-up. I’ve wondered why it seems so hard for me to pace myself, to proactively rest, to achieve balance between activity and relaxation. Over time I’ve realized these problems occur because resting is not just a habit. When the fatigue settles in it can often feel like a gate slamming shut.

Fatigue, along with pain, are the primary restrictions that have been placed on my abilities. The resulting frustration or sense of helplessness is a manifestation of the sadness and anger over the ‘infinite losses’ caused by chronic illness. Coping with these feelings is difficult. In this context, it’s a lot easier to say “just go and lie down” than it is to actually do it.

Behind the decision to stop and nap is a whole set of thoughts, feelings and beliefs about how you relate to work and productivity. If I’m writing an article and I feel brain fog and fatigue setting in, my first reaction is to feel frustrated with my body and tell myself to “tough it out.” Even when I take the reasonable step of stopping and lying down for awhile, there is a part of me that feels a creeping sense of guilt or self-blame. In a world where people with disabilities are applauded for “overcoming their limitations,” as if disability is a failure to move past, it’s hard not to worry if taking breaks is some kind of character flaw. I believe that it’s this mindset, this negative self-talk, that sabotages our attempts at pacing.

Becoming aware of our thoughts and feelings is a powerful way to take better care of ourselves – many people find that regularly practicing mindfulness meditation, journaling, or cognitive behavioural therapy techniques very helpful for developing greater self-awareness. Maybe I’m making a mountain out of a mole hill, but I think it’s important that we talk openly about the social and emotional impacts of valuing work and productivity over balance and acceptance. We need to prioritize healing the psychological as well as the physical. Because, ultimately, resting is an act of self-awareness, self-compassion, and self-acceptance, not just a solution for being tired.

Why Hard Work Doesn't Pay Off: Listening to Your Fatigue Instead of Fighting Through It

References:

Jackson, Kate. (2014). ‘Grieving Chronic Illness and Injury: Infinite Losses. Social Work. http://www.socialworktoday.com/archive/070714p18.shtml

Kromberg, Jen. (2015). ‘4 Difficulties of Being a Perfectionist.’ Psychology Today. https://www.psychologytoday.com/ca/blog/inside-out/201311/4-difficulties-being-perfectionist

Orenstein, Beth.(2010). ‘The Emotional Side of Chronic Fatigue.’ Everyday Health. https://www.everydayhealth.com/authors/beth-orenstein/

Winch, Guy. (2014). https://www.ted.com/talks/guy_winch_the_case_for_emotional_hygiene

 

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A Not-to-Do List for Life with Fibromyalgia

not-to-do-list-pinterest

I recently began reading Toni Bernhard’s wonderful book How to Live Well with Chronic Illness.  I was inspired to write this post after reading a section in her book where she outlines her ‘not-to-do list’. Bernhard rightly points out that it takes a great deal of self-discipline to stick within the restrictions imposed on your body by chronic illness.  In my own case I’ve found that most of my self-growth has come from recognizing, accepting and learning to do things differently in response to these restrictions.  I thought I would share my own not-to-to list:

  1. Do not equate productivity with self-worth: in my life before fibromyalgia I made work my top priority. I was in my mid-twenties and trying to start a career. I made a lot of sacrifices in my relationships and personal life in order to achieve these goals.  When all this came crashing down and I was no longer able to work, I could not see how I added value to the world around me.  Although I lead a much more well-balanced life now, I still have that voice in the back of my head every day judging whether I accomplished enough, and in turn, how good I feel about myself.  Now I challenge these thoughts.  When you live with chronic illness, every act of self-care, pursuit of a hobby, time spent with a loved one, or even regular work are all “productive”.
  1. Do not spend more time with toxic people then you choose to: we all have people in our lives, whether friends, colleagues or family members who are difficult to be around. They make us feel upset, drained, and negative. Sometimes I refer to these people as ‘energy vampires’- after visiting them, you feel depleted and depressed.  These are people that you need to set boundaries with, regardless of any guilt they may throw your way.  Toni Bernhard writes about having a revelation that she was not personally responsible for the behaviour of other people.  She practices equanimity about the fact that other people often don’t act the way we want them to, which I think is a valuable insight for people living with chronic illness.
  1. Do not push through: at the beginning of my illness journey, I never let myself “give in” to the fatigue or pain I was experiencing. I would stay out at a cafe all afternoon, even if I started to go cross-eyed with exhaustion, rather than surrender to my limitations.  Now I understand that this not-to-do actually helps me transcend my limitations, rather than surrender to them. After taking a Mindfulness Based Stress Reduction class, I learned to develop a different relationship with my body.  I try to work with my body, rather than in spite of it. For example, I really wanted to write this blog post today, but I am especially fatigued after a bad night’s sleep.  So instead, I am writing one bullet point, then resting, then writing etc.  You have probably had ‘pacing’ recommended to you before.  Personally, I don’t usually follow a rigid pacing schedule, like 15 minutes work, 15 minutes rest, etc.  Instead, I regularly check in with my body and accommodate accordingly.  To me, for pacing to be successful, it needs to be about more than scheduling; it’s about building a better relationship with your body.
  1. Do not add judgment of yourself on top of the challenges you already face: most of us are our own worst critics. We often set impossible standards for ourselves.  Even in the face of the challenges of chronic illness, I still think that I should be more positive, zen, strong, or competent, among other things.  When I get upset about something, I’m good at piling more judgment on top of myself for even being upset in the first place.  By being more aware of my inner dialogue, I’m getting better at recognizing when I do to this.  When I catch myself, I try to say ‘this extra judgment isn’t helping me deal with the real problem here’.  I take a deep breath and begin again.
  1. Do not say “I should” or “I have to” or “I must” to yourself: These types of statements set impossible standards for yourself, and are unrealistic given the constant flux of symptoms that characterize chronic illness. I’ve learned it’s important to hold intentions about what I would like to cultivate more of in my life.  Intentions are always present.  We always hold them in this moment. Goals about what you should/must/have to always do exist in the future. When you live with chronic illness you have so little control over what tomorrow will look like. ‘I should’ statements presume an all or nothing definition of success. These types of statements set yourself up for failure. It’s more helpful to say “I’m going to try my best to do __”. Hold this as an intention, even through set-backs.

Self-Care as a Mindset: What I Learned at the #SelfCareMvmt Summit

SelfCare Mindset

 

On Monday evening I attended the first ever Self-Care Movement Summit in Toronto, Canada. We arrived at the Mars building, a downtown hub of innovative tech and entrepreneurial companies, to register and enjoy catered refreshments, before taking our seats in the auditorium. The audience, of around 250 people, represented the diversity of the people who live with chronic illness – young and old, with visible and invisible chronic conditions. We were there to listen to a series of panelists and speakers talk about their personal or professional experiences using self-care strategies to meet the everyday challenges of life with chronic illness. As these informative and engaging speakers discussed the multifaceted aspects of this topic, I came to new realization about the meaning of self-care. Self-care is both a set of practical strategies, and a mindset, a particular way of understanding and relating to the activities of everyday life.

The core of the self-care mindset that emerged throughout the evening was acceptance of life with chronic illness. As Margaret Trudeau, the keynote speaker, summed up – coming to the realization that “this is the hand you’ve been dealt and the hand you have to play”. But finding acceptance is a long process. Margaret Trudeau shared her health journey living with bipolar disorder and how she experienced the five stages of grief after her diagnosis – more than once. She said that, in her experience, the first step towards accepting life with chronic illness is forgiving yourself. Your illness is not your fault. During the patient panel, Kirstie Shultz discussed self-care as being kind to yourself, every day. In her presentation on mindfulness practice, Dr. Lucinda Sykes talked about the importance of observing and learning from our daily experiences, without judging ourselves. Overall, humor was woven through many of the talks as a way to live positively with chronic illness. For example, John Bradley named his book on Crohn’s disease the Foul Bowel. Kristen Coppens described her eight illness as a “chronic party”. These insights into the self-care mindset are about relating to ourselves in a new way as we address the daily challenges of life with chronic illness, in a compassionate, forgiving, non-judgmental, humorous way.

The second theme that emerged about self-care as a mindset was finding balance in the activities of everyday life. In the patient panel, Marinette Laureano talked about a holistic approach to her self-care practice, by balancing her faith, family, friends and fun in her daily life. Kirstie Shultz described the zero-sum game of fatigue and chronic illness – working to find the balance between activity and rest. Kristen Coppens discussed the challenges of balancing work and illness. In his talk on this subject, John Bradley discussed achieving success against your own measures, rather than letting your goals be defined by the external world. He described his own experience working with chronic illness, and how he found balance by trying to “be the tortoise and not the hare” in achieving work goals. Balance as part of the self-care mindset is more of an intention rather than a constant state, a learning process of respecting the limitations of chronic illness while participating in the daily activities of life.

The third aspect of the self-care mindset is becoming an advocate in your community. Robert Hawke reminded us that, as patients, we are experts with our own wisdom about our health. Dr. Lucinda Sykes discussed mindfulness as a practice of developing insight about ourselves and cultivating the collective wisdom of people living with chronic illness. She said the summit was a celebration of human potential and our heritage of resiliency down the generations. Grace Soyao, of Self-Care Catalysts, explained that the voices of people living with chronic illness need to be heard and that we have the knowledge to drive change. Change like patient-centred care in the healthcare system, increasing research about chronic illness and reducing stigma about living with chronic mental or physical illness.  It can be hard to share our illness stories. Robert Hawke noted that we prefer to share our shiny selves with the world, rather than our difficulties and challenges. But when we do share our stories and everyday self-care strategies with each other, as Filomena Servidio-Italiano said, “The ordinary becomes extraordinary.” As part of the self-care mindset, advocacy is about self-empowerment, connection with the chronic illness community and society at large, and celebrating the greatness in ordinary accomplishments that we face every day.

Acceptance. Balance. Advocacy. Connection. These are all critical elements of self-care as a mindset and a way of relating to the ordinary activities of daily life with chronic illness. We can learn to pace our efforts, to eat nutritiously, to exercise more, to use practical self-care strategies. These are important wellness tools. But underneath, cultivating a self-care mindset is the key to improving our health and wellbeing as we live with chronic illness.

I want to thank Self-Care Catalysts and Health Storylines for an inspiring and informative evening. I’m looking forward to participating in advocating for self-care as a movement!