The Pain-Energy Cycle and How to Pace Yourself with Chronic Illness

It can be hard to resist the urge to do everything at once when you have energy between flare-ups. But it’s important to remember to rest.

We’ve all been there — facing days on end of bad symptoms, feeling really unwell, and being bedbound or sofa bound and barely able to walk to the kitchen, let alone think about the things you might need or want to do.

And then comes a day with a bit of energy and some semblance of normality. You’re still in pain and still not feeling 100%, but this is the best you’ve felt for a while.

You know that you should probably rest anyway and ride out the flare-up, but with chronic illness, it’s never that simple.

You don’t know if the flare will pan out smoothly or what the next day will bring. You could rest all day but still wake up feeling the same tomorrow — or worse.

With chronic illness, good days can be rare, and energy even rarer. So, as soon as you can get an ounce of it, it can be hard to resist the urge to do everything at once while you feel more able to.

This is a cycle that’s all too familiar to anyone who lives with a chronic illness, long-term health condition, or chronic pain. It goes something like this:

1. I have a bit of energy.
2. I overestimated my energy and did way too much.
3. I’m flaring from doing too much and need to rest.
4. I’m resting, but I feel bored, guilty, and frustrated.
5. Oh, I have a little bit of energy again.

If you’re stuck in this cycle, know it’s not your fault. Here’s more about why this happens and what you can do to break the cycle and pace yourself.

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What leads to this cycle?

This pain-energy cycle is influenced by many different factors, including:

The unpredictability of chronic illness

The complete lack of predictability of chronic illness means that you often cannot rely on your body to feel better on a certain day, or even to feel better after you’ve done anything that’s supposed to help.

But because you don’t know this, and you’re used to your chronic illness flaring at random, unforeseen times, you know how precious any amount of energy is and you know that you may not have it tomorrow.

The anxious part of your brain then says, “Oh my gosh, we have to do everything right now because if we don’t, then we could waste this precious energy which might not be here again tomorrow, and then we will be even more behind on the things we need and want to do.”

Internalized ableism

For those unfamiliar with the term, “internalized ableism” is when you internalize negative stigmas about disability and chronic illness and apply them to yourself. This could include thoughts like “I’m so lazy for resting” or “I’m not being as productive as a nondisabled person and that’s a bad thing.”

These thoughts often unconsciously crop up in our minds when we’re trying to rest during a flare-up of a long-term health condition or disability.

We’re surrounded by such ideas all the time, even if they’re not directly applied to disability. We’re constantly immersed in messages about working hard, being productive, go-getting, pushing through tough times, and not giving up. So, when we actually rest, we might tell ourselves that we’re giving up and, therefore, not good enough.

The mind may be active when the body is not

Your mind may still be active, full of ideas about the things you want to do and wish you could do, while your physical health and mental health may not be in a state to do them. This can result in strong feelings of impatience, frustration, and boredom.

So, whenever you get the chance to actually do something, even if you know it may make your health worse, your mind feels such a great need to be occupied that you can end up ignoring your health.

So, how can I make this cycle less difficult for me?

Here are some ideas about things you can do to make the cycle feel a little less rubbish.

On an average day, do little and often

This may sound obvious, but it can help take the pressure and stress out of resting when you need to do nothing. If you do need to work on something, try as often as you can to do as little as you can.

For example, focus on a task for 1 hour every day rather than waiting for a better day to do 7 hours of work, which will feel extremely draining. Even when I’m going through my worst flares, I feel a little less worried about deadlines because the “little and often” work has built up into some progress that I can stay satisfied with for a while.

On days when you need to rest, focus on tiny tasks if you can

For example, send an email, sort through your emails, make a list of things you need to get done, do some medical admin, or text a friend you need to catch up with.

Your mind will feel a little more occupied and you’ll feel a little more comfortable resting. Remember, rest is productive, but accomplishing tiny little tasks might help you feel more rested.

Incorporate flare-ups into your plans

This isn’t something that everyone will be able to do because flare-ups can be very frequent and take up a lot of your week or many weeks in a row. But when I can, I base the number of flare days I’m having on my schedule.

So, I might set aside 2 days for a really bad flare when I know I won’t be able to do anything, another 2 days for a bad flare when I can’t do anything apart from tiny tasks, and another 3 for an average day when I can work little and often.

This means that on the days that I’m flaring badly, I know that I have planned for this. It’s important to restate that this isn’t possible for everyone, and there may be weeks or months that go by when such plans are impossible.

Practice challenging internalized ableism

When you catch yourself having negative thoughts based on internalized ableism, such as “If I don’t do any work, then I’ve wasted the day” or “I’m so weak for not being able to push through this right now,” challenge them.

For example, remind yourself:

• “I’m not lazy for resting when I need to rest. Anyone else in my position would do the same.”
• “It would be a greater waste of the day if I spent it pushing through these symptoms only to make myself feel worse tomorrow.”
• “I know this day isn’t going to be full of work, so I might as well spend it wisely by resting, which is productive in itself.”
• “Making myself rest when my mind desperately wants to do so much is anything but weak. It’s really difficult to make that decision and I’m doing the best I can.”

Test yourself on good days

When one of those days comes around with some energy, instead of making plans to do everything at once, do a tester task.

For example, if you need to get laundry done, try it and then see how you feel afterward. Take a break for 15 minutes, and if you still have some energy, do another tester task. For example, maybe your next task is working on an essay for an hour. After this, take another 15-minute break and see how you feel.

Keep repeating this until you start to feel worse after a tester task. Then, call it a day and know that you did everything you could. This is something I do that helps me not push myself too hard on better days.

Set aside a time of day when you will do nothing, every day, no matter how you feel

It can be from 5 p.m. onward, or from 2 to 5 p.m., or from 9 to 11 a.m. — whenever you need it most.

Again, this might not always be possible for everyone. But having a set rest time when you know you’ll just take a nap or watch your favorite TV show no matter how you’re feeling will help you get into good habits around taking breaks. Plus, it’ll help you feel less bad for doing so — even though you have nothing to feel bad about!

The bottom line

I can’t promise you that you’ll completely break this cycle. Chronic illness by its nature involves a level of living in between areas of “pause and go” based on your symptoms.

So, don’t put pressure on yourself to completely break this cycle because you’ll end up feeling bad about yourself if you can’t. For all the reasons described above, it’s incredibly hard to. But you can try some of these steps to make it feel like you have a little more control. Remember, this cycle is not your fault and resting is productive.