It’s Okay To Rest
For people living with chronic illness and dynamic disability, rest is part of the solution not the problem.
In 2017, my health was the worst that it had ever been. I had a tremor, my nerves ached, and my cognitive function was so poor that I could barely read. I stopped working, since reading was a critical part of my job as an editor.
I’d dealt with health problems before, and for the most part I’d learned to manage them through diet and supplements and other lifestyle interventions that are easy to find when you’re looking for resources to help you get well. I read blog posts about wellness and I listened to podcasts about wellness and I devoured books about wellness. But in 2017, none of those recommendations were helping me. My doctor wasn’t helping me either, but that’s a whole other story that is unfortunately typical in chronic illness diagnosis.
Since I couldn’t find any resources to help me navigate my poor health, I decided to start interviewing other people who’d been in the same position. I wanted to know about the protocols and weird health hacks that were really making a difference for people living with chronic illness. You can see what I was looking for in this excerpt from my first call for interviewees:
I would love to talk to people who have experienced chronic illness and/or mystery symptoms, been frustrated/stymied by the medical system, and found some relief through diet/lifestyle changes.
And as I began to interview people, I was surprised by how few testimonials I collected for specific diets or other trends that appeared so popular on social media. Over the last two years I’ve interviewed over 60 people and while most of them have experimented with paleo and keto and veganism, only a handful have raved about major improvements in their symptoms caused by diet.
So what did make a difference? Over and over again, people told me that they saw the biggest improvement in their symptoms when they learned to really listen to their bodies’ cries for rest.
And I had learned that the way of managing it was as soon as I thought “I’m a little tired,” that was the time to stop. Right then. Not five minutes from then. It was right then and not when it’s like, “Oh, I’m really tired.” But the moment [I heard] that little whisper in the back of the mind, that you almost don’t notice of “I’m a little tired.” That was the time to stop.
-Julie Rehmeyer in Episode 25 of No End In Sight
It took me a long time to recognize this pattern, because I’d been thinking of my need for rest as a problem. Every time I went to the doctor, I’d make a list of all the issues that I wanted to address. Over the last two years, this list has typically included nerve pain, involuntary movements like tremors, my wildly variable heart rate, and the amount of sleep and rest I seem to need just to function.
Getting a lot of rest is difficult. When we start to experience fatigue, we are inundated with advice to keep moving. When our medical bills begin to pile up, we often sacrifice rest in order to stay afloat financially. Our families start to think that our main problem is laziness. Our doctors suggest that maybe all of this rest is a sign of a mental health condition. And sometimes it is. But sometimes, our mental health begins to suffer because our need for rest is forcing us to disappear from our own lives.
Rest is also different from sleep. Rest is conscious and variable and can be very very boring. I know I need to rest when my thoughts or my movements start to feel sluggish. At this exact moment in time, I need 8 hours of sleep and an additional 8 hours of rest each day. If you are healthy, this may sound like a self-indulgent amount of rest. If you are sick, you might need much more rest than that. Rest is personal.
In 2017, it turned out that toxic mold was largely responsible for my rapid decline in health. And so when I left that moldy house, I hoped that I might be able to leave rest and chronic illness behind. And in some ways, I did. I started reading again, then writing and editing. My tremor began to ease. But still, when I tried to return to my previous level of activity, I would crash. Even now, when I try to overcome my need for rest, my brain becomes sluggish and my arms begin to twitch.
I’ve started to understand what other people with chronic illness and dynamic disabilities have been telling me this whole time: giving my body a lot of rest is the #1 way that I can take care of it. When I give my body the rest it needs, I have the best chance of enjoying days and even weeks without symptoms. Resting has a bigger impact on my symptoms than diet, exercise, or cultivating a positive outlook.
And cultivating a positive outlook is hard when you need a lot of rest. During periods when I need even more rest, I sometimes feel incredibly guilty as I turn on the sixth episode of Deep Space Nine that day or download another romance audiobook. I feel guilty that I’m not more productive and I feel guilty that my husband has to do so much more around the house and I feel guilty that I’m not doing something active to get better. So I need to remind myself that resting is what I must do to have better days in the future.
When you think about it, rest is one of the most productive things that you can do. But yet there’s such resistance to really leaning into rest.
-Yvon Stokkink in Episode 28 of No End In Sight
I can’t promise that rest will put your symptoms into remission. And I can’t make it easier to hear from friends, family, and colleagues who want to know why you’re resting so much instead of taking action to improve your health. But I can tell you that I’ve gone looking for the lifestyle change that would have the biggest impact on my health, and I found it: rest. So if you’re looking for non-medical ways to manage the symptoms of your chronic illness or dynamic disability but you only have the time or money to try one thing at a time, try to let go of the guilt and give your body the rest it’s been asking for.