The Question Behind the Pacing and Resting Regimen: Who Am I When I Don't Have Energy To Do Anything?

By Katarina Zulak

When you first develop fibromyalgia, or another chronic illness, like long covid or ME, there are many practical lifestyle changes you can make, mental and physical adaptations that can stabilize, and even improve your symptoms. I've been in an 'advisor' role recently as people close to me have been unfairly, and painfully, struck with chronic fatigue. In my advisor capacity, I've shared everything I know about the art and science of pacing, the vital importance of rest and relaxation, and how to understand the mind/body nature of these illnesses, especially accounting for the role of stress on symptoms. But after my conversations, I'm struck by how these technocratic terms, like 'lifestyle change' and 'self-management' and 'pacing' can obscure the real impact of living with of illness, how these changes go to the heart of who you are, how you choose to live your life, and what your expectations of yourself are. We can't overstate how much your mindset really determines the way you receive and apply these 'lifestyle changes' in your life, and how rarely this aspect of 'managing' illness is talked about.

At a simplistic level, how you choose to spend your time reflects who you are, the person you try to be. As a healthy person, you likely devoted your time or energy to what was important to you, whether that was being with family, being successful at work, having adventures or travels, connecting with friends, creating a home, getting outside as often as possible, relaxing, expressing yourself creatively, or just having fun. We all have judgements about the lifestyles of others that reflect our own values, such as "no one works hard anymore, they think they can just waltz in, do the bare minimum, and get promoted" vs. "thinking work is the be-all-end-all is archaic, we need to make space for the important things in life." However humorous, we really define who we are through these choices, which reflect our values and self-expectations.

It's so difficult to watch someone come to the realisation that the life role they feel most defines who they are, whether that's being an athlete, an entrepreneur, a parent, or an advocate, will never be the same again because they just won't have the energy to do it. How do you express your personality or your values, how can you be 'yourself', when you can barely do anything at all? That's the despairing question lingering in the background when a newly diagnosed person begins to grasp the rigidity inherent in the pacing and resting regimen required to 'self-manage fatigue'. There needs to be space to accommodate the feelings that accompany these realisations, the anger and the sadness.

At the same time, we are where we are with chronic fatigue, and there are helpful mindsets that can see us move forward, towards a new sense of self despite illness, and then there are unhelpful mental traps that can get us mired in the darkness of our grief. I always try to explain that there is hope, encapsulated in a saying that I clung to after my diagnoses: "it may not be the life you imagined, but it can be a good life nonetheless". If you become stuck in negative mental traps, then it becomes much, much harder to use pacing as a tool to enable you to resume meaningful activities. This is the devil on your shoulder saying "What's the point of resting or pacing? Your life now sucks anyway, compared with everyone else's, and there's nothing you can do to fix it." In contrast, the angel on the other shoulder can say "Take this meditation stuff seriously. If you rest before and after, you can have a nice coffee with a friend. Won't that make today so much better?"

One of the most common mental traps is the game of sizing up your life with illness against the lives of your successful peers, or against your former life, in order to make negative comparisons. I did this all the time when I first got sick. I felt sad, bitter, and de-motivated when I compared what I was doing with Sally and Alex, who just bought a house after Sally's promotion, or Kareem and Alicia, who just went on an adventure vacation. From this perspective, whatever improvements I made seemed so trivial that they were pointless. What was enjoying one pleasant drive with my husband, after learning first-hand the benefits of prophylactic afternoon naps, compared to the busy, successful lives of "everyone" around me? This is the classic success/failure trap: either you are wildly successful in life, or a complete and miserable failure. Underneath it all, I think I was most afraid of not living up to the expectations I'd had for myself, or that others had had for me.

There are always other people who are seemingly more successful than you are, no matter what you accumulate or accomplish. Just like there are always other people who struggle more than you do. Reframing comparisons in order to feel grateful for what I can do has made me better able to appreciate the small moments in my daily life. That's not to say you aren't entitled to feelings of grief. You are! However, we do have a choice about what perspective we take, and who we compare ourselves to. I may not be the career-driven adventurer I wanted to be in my mid-20s, but I have a cozy home, with a husband I love, a crazy cat, and several hobbies, like writing, that I find great enjoyment in. That's more than a lot of people, like millions of Ukrainian refugees, have right now.

The devil on your shoulder may want to respond sarcastically, "Oh great, so at least I'm not a refugee or something." But seriously, you could be; any of us could be. Acknowledging that doesn't mean your life is easy, but that there are almost always things to appreciate or be grateful for. This includes daily 'lifestyle change' tools that can make today or tomorrow a little bit better.

Learning to see the unhelpful mental traps I got stuck in for what they were, like negative comparisons or success/failure thinking, was as important for me learning to live better with fibromyalgia as all of the pacing, resting, and mind/body advice that I was given. There is a point to all that pacing and resting, in doing something small, but meaningful today. It really doesn't matter what Sally and Alex or Kareem and Alicia are doing.

Expectations of what you're "supposed" to have done or achieved will only bedevil you if you cannot let them go. On the other side of this learning curve, you don't need to define yourself by what you do with your time, but by your character, your tenacity, your ability to live in the present, and appreciate the simple pleasures in life, or whatever lessons about yourself you've learned through living with fibromyalgia. No one can take that away from you.