The Do’s and Don’ts of Pacing With Chronic Illness: A Practical Guide

Pacing for energy management with chronic illness isn’t exactly a walk in the park—I know firsthand how tricky it can be. Some days, it feels like a never-ending game of trial and error, and other days, it’s like trying to outsmart a rollercoaster you didn’t sign up for.

That’s why I put together this guide—no fluff, no unrealistic advice, just real, practical strategies to help you navigate pacing without burning out. We’ll break down the do’s and don’ts, avoid common pitfalls, and find a rhythm that actually works for you, not against you.

My Journey with Pacing

In my journey with pacing through the challenges of chronic illness, the learning curve resembled a rollercoaster of trial and error. Initially, I found myself juggling between pushing too hard and succumbing to the fear of missing out on life.

You see, even though I’d been feeling the symptoms of my chronic illness for many years before formal diagnosis, they weren’t frequent or as debilitating. But in 2018, when I did finally get diagnosed with IIH, the symptoms peaked and have never really gone away. I had to shift gears from being a full-time employee and having an active social life, to working part-time from home and setting myself some boundaries regarding the activities I chose to participate in.

It took some time, but eventually, I found a new rhythm to help me sustain the energy I do have, and to manage my symptoms and tasks on lower-energy days, without sacrificing the things that I enjoy completely. Yes, there were some things I had to let go of or learn to do differently, but that’s all part of this chronic illness lifestyle that I’ve learned to accept, and I hope to help you learn to as well!

Now, let’s delve into the concrete “Do’s and Don’ts” that can transform the pacing game for anyone facing the daily battles of chronic illness.

The Do’s of Pacing With Chronic Illness

Learning to pace yourself when living with chronic illness is easier when you know what to do. Here are 3 of the most important shifts I made in my lifestyle to help me adapt and start pacing myself while living with chronic illness.

DO:

• Learn to Listen to Your Body

• That feeling that something is “off” is a clue that it’s time to slow down. Even when I experience just a brief pain that seems to go away as soon as it comes on, I know it’s a sign that there’s a flare-up happening, even if it’s not yet debilitating. This is when I make sure I take some meds before things get worse, and I make sure whatever my “Plan B” for the day is can be easily implemented (confession: sometimes this is when I create a “Plan B” because even I get caught up in feeling good and thinking it will last!).
• It can take some time to know your body’s signals and understand the difference between general exertion and a sign that things are taking a turn for the worse. But the more you can tune into and keep track of the messages your body is giving you, the better equipped you’ll be for the future. I suggest keeping track of your pre-flare symptoms in a notebook or on your phone and reviewing things occasionally to see if you notice any patterns.

DO:

• Prioritize and Plan

• When you’re living with a chronic illness, learning to prioritize and plan in alignment with your energy levels is crucial. And priorities shift when chronic illness comes into play, too. For me, it’s most important to make sure that laundry and dishes are clean – if we get to put them away, that’s a bonus! It’s a priority to make sure that I have easy meals to make for myself on bad days, as well as one or two “this will be great if I have energy but the ingredients will keep if I don’t” meals, as cooking is one of my passions.
• While we can’t always plan around our chronic illness, because we may never know when a flare-up will strike, it can help to think of our tasks in terms of biggest impact, most urgent, and also in terms of how much energy it takes us to complete these tasks. This will help us maximize our high energy days.
• On low-energy or flare days, it’s always helpful to have a Plan B. This is why I always cook for 4-6 instead of 2 (our family is just me, hubby, and our new dog) – this way both hubby and I can enjoy leftovers, or I can freeze some for when we’re not able to cook.
• This is also why I created the Daily Routine Guidebook for Spoonies – to help give us a way to plan for both good days and bad, so we can make the most of both while enjoying some much-needed flexibility in our daily routines. You can check it out here!

DO:

• Build a Support System

• We know that living with a chronic illness can be overwhelming and debilitating, but sometimes we underestimate the impact that having a strong support system around us can have. It can help us feel less lonely and has also been shown to be helpful in preventing depression and improving self-esteem.
• Support systems can be family, friends, care providers, or more formal support groups created just for people with chronic illnesses. Each can lend its own special benefits while helping you to thrive with chronic illness.

Your support systems don’t have to be in-person, either. We can gain just as many benefits from virtual groups, as well. These are especially great if, like me, you can’t get out and about on your own (I no longer drive), or are otherwise needing to stay home or in bed. There’s even virtual therapy these days! You can also check out my own Facebook group that I created to help share practical advice and encouragement and create connections with fellow spoonies.

The Don’ts of Pacing With Chronic Illness

Knowing what not to do can save you considerable time and effort when it comes to navigating life with a chronic illness. In this section, let’s shine a spotlight on the three pivotal “Don’ts” of pacing with chronic illness, revealing the pitfalls to sidestep on your journey toward balanced well-being.

DONT:

• Avoid Warning Signs of a Flare-Up

• Over time, you may begin to be able to notice patterns in symptoms or dips in energy that can signal a flare-up is on its way. With my migraine disorder, I often see flashes or “auras” anywhere from a few days to right before a migraine hits. This is my cue to make sure I’ve got my priorities taken care of, and a backup plan ready to go so that when it hits, I can rest. It’s also a sign that it’s time to start slowing down and nourishing my body to support it through the attack.
• It’s also important to remember the importance of not pushing through these signals – trying to get more done before things get worse. Usually, by the time we’re feeling the symptoms, we’re already flaring. And overexerting ourselves will just make it worse. Slow down or simply rest as you can, and prepare to be out of commission until it passes.

• Don’t Overcommit

• Burnout is a serious thing, whether you have a chronic illness or not, but for us spoonies, it can be even more detrimental to our health. Learning to pace ourselves, say “no” when we need to without guilt, and to learn to speak our needs with our loved ones and social circle is so important to our well-being.
• Remember, taking care of yourself is the VIP here. Don’t let the never-ending to-do list overshadow the need for some time to yourself to manage your symptoms and nurture yourself. Your well-being comes first, and that means putting self-care above all those extra tasks that can wait.

• Comparison is NOT Your Friend

• It can be so easy to fall into the trap of comparing ourselves and our pace to that of healthy people. But it’s never helpful. It’s like comparing an athlete who’s been training for years to a rookie who is also recovering from an injury – they’re completely different and so are their abilities. It’s ok to slow down and take the time you need to so that you can ensure your well-being is maintained as much as possible.
• It’s also worth celebrating small victories. Let’s face it: getting stuff done whether it’s tackling the laundry, walking the dog, or grocery shopping is a huge feat some days. It’s worth celebrating the days when you’re on top of your energy and symptom management and get things done in a way that’s healthy for you. This will help encourage and motivate you to continue pacing yourself in the future.

As you continue honing your pacing skills, consider incorporating adaptive technology and tools that align with your lifestyle. From mobile apps to remind you of breaks to wearable devices tracking your energy levels, leveraging technology can add a dynamic element to your pacing strategy. Additionally, explore creative outlets as a means of self-expression and stress relief; engaging in activities like art, writing, or music can be therapeutic and complement your overall well-being. When it comes to building a support system, think beyond close friends and family – online communities and forums related to chronic illness can offer valuable insights, shared experiences, and a sense of camaraderie. Remember, this journey is uniquely yours; don’t hesitate to experiment with unconventional approaches that resonate with your individual needs and preferences.

Knowing the do’s and don’ts of pacing with chronic illness is your first step towards maneuvering confidently and effectively. Remember to learn from each misstep, and keep pushing forward.

Do you want more practical guidance on pacing with chronic illness? Download my exclusive workbook, 5 Keys to Adaptability for Chronic Illness, for more in-depth insights and actionable tips. Get it by filling out the form below!

Until next time,