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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Why It’s Okay Not To Work When You Live with Chronic Illness

Having an illness like fibromyalgia is not a reflection of your character. No one works harder than someone with a chronic illness – every day is a struggle to work through symptoms and do your absolute best to be where you’re needed.

Why It's Okay Not to Work When You Live With Chronic Illness

The biggest change in my life that followed my fibromyalgia diagnosis was leaving my career because I just physically could not keep up any longer with the demands of the job. I’ve never felt more conflicted about making a decision. On the one hand I felt relief – it was incredibly stressful to constantly fail to meet expectations while working harder than ever before. On the other hand, I felt like I was losing a core part of my identity. After all, a career is not just what someone does between 9 to 5 – it’s often how a person understands and defines themselves.

Have you ever noticed that the first question someone asks you after being introduced is “so, what do you do for a living?” It’s common to answer the “what do you do for a living” question by saying “I am a ___“.   In our society, an occupation is not just what you do but who you are.

We place a moral value on being hard-working – putting in daily effort to provide for your family and contribute to your community – as long as you get paid for it. I still dread meeting new people and having to answer the what do you do question. It’s hard not to internalize the negative judgments about people who don’t work – usually variations on ‘they’re lazy, incompetent, and a burden to society.’ In Canada, where I live:

  • 14% of people with fibromyalgia reported that they were permanently unable to work (compared to 2% of the general public);
  • 43% had annual personal income less than $15,000 [poverty line] (compared to 29 per cent of the general public) (Parlor).

“Our society is largely driven by money, profit, and earning power, and this makes our professions a major part of how we identify.  So if you lose your job, you can easily lose your identity, too” (Norris, 2016). I felt so disoriented in the months after I left my job. It was hard to figure out who I was now and how I fit in.

As I began to engage online  with other people living with chronic illnesses and disabilities, I learned more about how to understand work and disability in our society, and what that meant for me as I transitioned to staying at home.

Definition of Disability:

Initially, the label of ‘disability’ did not resonate with me. I associated it with a permanent condition like vision-loss rather than a fluctuating illness like fibromyalgia. But once I learned the definition of disability, it became clear how it applied to my situation. According to the American Disability Association, a disability is a physical or mental impairment that substantially limits major life activities (Blahovec).

Fibromyalgia impairs my abilities by causing pain, fatigue and brain fog. The lack of truly flexible accommodation in campuses/workplaces, like fixed work hours, deadlines and location, combined with stigma about invisible illnesses/disability, prevents my full participation in society.

Is Disability an Individual Problem?

The most common way we look at disability in our society is through the lens of ‘normal versus abnormal’. A person with a disability is different from ‘what is normal’ because of their limitations. This understanding of disability is often called the medical model – disability is an abnormal, medical condition affecting an individual (Scope).

We often hold up ‘inspirational’ examples of individuals with disabilities who ‘overcome’ their limitations by ‘fighting through’ the challenges they face, all the while having a good attitude (Abilities). The flipside of this is if you go about your business, pacing yourself within your limitations, you may be judged for “playing the victim” by “giving in” to your disability!

Disability as a Social Issue

If we were able to create an inclusive society, which removed the barriers that restrict life choices for people with disabilities, then everyone could participate equally in our communities. “The social model of disability says that disability is caused by the way society is organized, rather than by a person’s impairment or difference” (Scope). Barriers can include attitudes (stigma, discrimination), policies (workplace accommodations) and physical design (accessible entrances, transportation). For chronic illness advocates, joining the disability movement can help to “advance not only the goals for people with similar challenges, but for the whole disability movement” (Blahovec).

After I learned about the medical model versus the social model of disability, I felt like a light bulb went on inside my head. Here’s what conversations around disability taught me about living with fibromyalgia, and I think applies to anyone who needs accommodations at work, or no longer works:

  • Having an illness like fibromyalgia is not a reflection of your character. No one works harder than someone with a chronic illness – every day is a struggle to work through symptoms and do your absolute best to be where you’re needed.
  • News flash for your inner critic – not being able to participate fully in work/school is as much about ablest barriers as it is about physical limitations, and neither of those things is your fault!
  • If your contribution to the world is not in the form of paid employment, it is no less valuable than anyone else’s. The world is a better place because you’re in it!
  • Finding your identity outside of career makes you a more well-rounded person, whether it’s in relationships (like being a parent) or passion projects (creative expression, writing/advocacy).
  • Pacing your activities within your limits is working smarter. There is no need to “overcome” or be “inspirational” – just living your life the best way you can is all you need to do.
  • Having an illness or disability is pretty commonplace. Living with fibromyalgia is not your individual problem, but just another thread in the fabric of the human experience overall (we need to normalize life with fibromyalgia rather than pathologize it!)

(This article originally appeared in the June 2018 edition of UK Fibromyalgia Magazine)

Resources

Abilities (Disability as Inspiration: Can Greater Exposure Overcome this Phenomenon?)

Sarah Blahovec (HuffPost Blog: I have a Chronic Illness. Here’s Why I Embrace the Label ‘Disabled’)

International Paralympic Committee (UN Convention on the RIghts of Persons with Disability)

Margaret Parlor (Canadian Women’s Health Network: Understanding Fibromyalgia)

Scope (The Social Model of Disability)

Balancing Dreams Against Working Within the Status Quo

Balancing Dreams Against Working Within the Status Quo

The last year has been a slow but definite change in my illness and my outlook. At the end of 2015 I was managing my fibromyalgia, more or less, and struggling through a part time social work degree. This was part of my retraining after diagnosis, into a career I hoped I could pursue part time. Over the holidays I got a bad cold. Luckily, the first virus since my illness onset 5 years earlier. I recovered from the runny nose and coughing, but not from the constant fatigue. I had the worst brain fog I’d ever had, with trouble even seeing what was in front of me. I developed anxiety about being caught out during a brain fog flare, after becoming disoriented in a store and having to leave without paying. It’s scary to lose the ability to find an item in a store, figure out how to pay for it (without forgetting your pin code) and walk home.

Around this time I was supposed to be finding a practicum placement for my degree program. There was no way I was going to be able to finish the winter 2016 term, never mind commit to functioning 15 hours a week during specific hours. So I put school on hold. I worried I was back to having my life on hold.

Overtime I started blogging more again, connecting with other people living with chronic illness on social media. I took a health coaching course. I’ve considered many different ideas about how I could work from home. Recently it occurred to me that, with my prior experience in Korea, I could take a course to tutor English as a second language one on one, at my set hours, or online.

I’ve lost about five years of work experience and all my confidence in anything professional. It’s a combination of the uncertainty of my condition, of the horrible experience of slowly losing my functioning, and the fear of going back to the worst moments of my illness. How can I make a commitment I don’t know I can keep? Maybe it’s the fact I am a people pleaser and a perfectionist, but the prospect of that happening makes me very apprehensive.

Then there is the whole issues of expectations. In my life Before Fibro (B.F.) I was a graduate student, planning on working in international health projects as an applied anthropologist (like HIV/AIDS or malaria programs). I travelled a lot and wanted to live all over the world. Now, that’s never gonna happen. It’s something I am sad about at times, but I have mostly reconciled myself to. I try to move forward and plan new plans.

But I can hear the voices of a few family members who would not be happy about my ESL tutor plans. “You’re settling, and not living up to your potential” is what they’d say. Am I sure I’ve tried every avenue to make make my dreams a reality? Is it ever right to turn your back on your passions? Am I just rationalizing giving up as ‘acceptance’? Perhaps.

There is something liberating about finding a pathway that I CAN follow. I can volunteer tutor. Take an online course. Apply to online positions that interest me or advertise and accept students that I want to work with. Make my own schedule. Every other career option seems fraught with unknowns, like placement requirements I may not be able to fulfill.

There is the appeal of tangible accomplishment as you see students learn. There is very little that is tangible about chronic illness. Improvements in health fluctuate. Hobbies can definitely help to fill this void. I find doing calligraphy gives me a sense of accomplishment. Blogging too. But I still feel a gap that I want to fill, a need to contribute beyond my own personal life to improve someone else’s. I’m excited to volunteer tutor for the library, two hours a week. I think that’s manageable. Maybe it won’t go beyond that, into work. That would be ok too.

I’d also like to be able to contribute financially to my family, even if it’s only enough for a vacation. This is a side benefit though and not one I want to count on. Living as a couple on one income is a stretch but we’re fortunate we are able to. I’m just not able to work enough to make a big difference. But I would be really excited to earn a paycheck.

After beginning this post I came across a quote by J.K. Rowling (Albus Dumbledore):

“It does not do to dwell on dreams and forget to live” – J.K. Rowling

Living with chronic illness has changed my relationship to my dreams. I want to live now, based on my current abilities, rather then wait on dreams.