Why 'Getting More Sleep' Doesn't Always Work for Autoimmune Diseases


We have all experienced a time when others have had advice for us. Whether it’s about our diets or our laundry, it seems there’s never a shortage of people who want to tell us what to do. I realize that most of them are trying to be helpful, and without people sharing all these little hints, we wouldn’t have the smash hit “Hack My Life,” would we?

But when it comes to dealing with a chronic illness, the advice train seems to spin out of control with all sorts of hints that will cure us because “Aunt Edna did it and she’s all better now.” Obviously, if there was something that would make us “all better now,” we’d be doing it. But I’m going to put the big picture aside for now and concentrate on one of the most common health tips I’ve ever been given: “Just get more sleep.”

It’s catch-all advice for every illness in society. Got the flu? Get more sleep. Got migraines? Get more sleep. Constipated? Get more sleep. Someone even told me to get more sleep when I was pregnant and having the worst morning sickness ever. I ended up in the hospital, but I’m sure had I managed to get some shut-eye, I’d have stayed home and finished knitting those booties! I want to share why this popular tip doesn’t always work for those of us with chronic illness.

I’ll start by explaining, very generally, how our diseases work on the brain. Somehow, they chemically interfere with our ability to fall into the type of sleep that’s the deep restorative kind. So when we sleep, we don’t go into the deep REM sleep that helps us heal. I don’t profess to understand how this all works, but I can tell you that it’s true. I now take medicine to help me sleep and fall into this deep healing pattern. If I don’t take it, I wake up in pain. So for many of us, simply getting more sleep isn’t going to help unless we can get the right kind of sleep.

But, even getting the right kind of sleep might not help us because our muscle weakness and fatigue are not actually caused by being tired. You see, at a very basic level, autoimmune diseases work in the same way the common cold or the flu work. Our bodies produce cells that attack the infection. But in some of us, these cells attack healthy tissue. It’s that process that makes those of us with autoimmune diseases overwhelmingly fatigued. And if it happens to be our muscles being attacked, we get very weak as well. The problem is that sleep won’t help this. Unlike a cold or the flu, which are both processes with a beginning and an ending, when the body attacks itself, there is no end. Sleep is meant to divert energy to the fight at hand – kill the invading organism – and then continue life as normal. But there is no invader in autoimmune cases, just a never-ending fight. There are pauses in the battle, but no ending, and no return to normal.

Finally, and probably most overlooked by well-wishers, is quite simply our pain. Most people don’t understand the pain these diseases often cause. I don’t even tell the whole truth about it anymore. What’s the point? I passed the point of having pain-free days long ago and who really wants to hear someone say they are in pain every day? And the only option I have left to control it is to start a regimen of narcotics.

But with pain during the day comes pain at night. And this is what most others don’t understand. That people in pain have trouble sleeping because of their pain. I know it seems intuitive to say if you sleep more your pain will lessen. But it’s because that’s how it works when a person is injured. The body relaxes as it goes to sleep and the injury can “un-swell” and start to heal. But in a body that’s always in pain, movement can help keep us loose and mask our pain. The lack of movement at night can highlight our pain. Our muscles tighten more. And we get fidgety trying to get comfortable. Add to that the fact that many of us have tender points on our bodies, or areas that hurt to be touched with even small amounts of pressure. Like laying on a bed. Even those nice pillow topped ones can feel like cement. Sometimes, it’s just easier to sleep in a chair. But we all know how great that sleep is.

So all in all, I understand that the idea of getting more sleep is usually very good advice. And most of us with chronic illnesses do max out on our sleep. We have to. But also keep this in mind: If you have a friend or loved one who is chronically ill, they may be experiencing one or more of these issues. They may be trying to get more sleep already and it might not be going well. So maybe next time just ask them, “How are you sleeping?”

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Creatas Images.


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

Inspiration concept crumpled paper light bulb metaphor for choosing the best idea

How Struggling With My Illness Changed My Perspective on Life

This moment is precious. Your time is precious. Have you ever thought about the probability of the occurrence of your existence? Think about it now, spend the precious time. What was the probability that your biological mother and father were going to meet, that their parents would meet, and hundreds of generations before them? Your [...]

Spoonie Hacks That Can Make Life With Chronic Illness Way Easier

People with chronic illnesses share their tips for saving energy. Read the full story.
man and woman making heart shape with hands with text 19 reasons people with chronic illness are awesome friends

19 Reasons People With Chronic Illness Are Awesome Friends

Dealing with chronic health challenges can be frustrating, complicated and even devastating, but the experience can also lead you to develop some pretty awesome qualities. Empathy towards other people who are in pain? Check. Understanding when plans need to be changed? Check. Content just chilling on the couch with some Netflix and chatting about your [...]

The Issue I Have With Memes That Say 'I Am Not My Illness'

“I am not my illness,” screamed the meme in my newsfeed this morning. I have seen this pronouncement perhaps thousands of times since my diagnosis, and yet, it still makes me uneasy. Though it sounds reasonable and even empowering at first glance, upon further reflection I am not sure I fully endorse the essence and [...]