The benefits of ‘bed rotting’ for NMOSD patients

There’s a lot of things that people don’t see about me. I deal with fatigue, pain, and other unpredictable symptoms that come with having neuromyelitis optica spectrum disorder (NMOSD). Even the simplest tasks can require monumental effort to complete. That’s why “bed rotting,” as it’s called, has become an essential yet often misunderstood part of managing my disease.

Bed rotting, a term that emerged from social media, refers to spending long periods of time lying in bed, doing little other than scrolling through a phone, watching TV, working on the computer, or simply resting. It’s not the same as sleeping or being bedridden due to illness. It’s about deliberately allowing myself to rest without guilt. It can be a form of self-preservation for NMOSD patients like me.

I usually do this on Saturday or Sunday. We have the usual household chores like doing laundry, cleaning, and buying groceries, but I don’t always participate in them. I’m fortunate to have an incredibly supportive spouse who takes on most of the week’s chores while I’m often bed rotting with my laptop finishing up some work.

Some of my NMOSD medications cause side effects, including drowsiness. It’s common for NMOSD patients to feel overwhelmingly tired, even after a full night’s sleep. It isn’t the kind of tiredness that a cup of coffee or a brisk walk can fix. Rather, it’s a deep, weary fatigue that demands rest. In the case of us patients, bed rotting isn’t a sign of laziness or depression; it’s a necessary response to the body’s need to heal and conserve energy.

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Battling the guilt

Despite my clear need for rest, I struggle with feelings of guilt when I spend a long time in bed. We live in a culture that values productivity and equates rest with weakness. I already feel the pressure to “push through” my illness, especially during the week when I’m working full time. Taking time to bed rot can feel like I’m admitting defeat.

But the truth is, resting is a crucial part of managing my NMOSD. Allowing my body time to recover prevents symptom flares and helps me maintain long-term stability. Bed rotting isn’t giving up; it’s listening to my body and giving it what it needs.

To the outside world, extended periods of bed rotting might look like depression. Withdrawing from activities, staying in bed all day, and lacking motivation can be signs of depressive episodes. But the difference for NMOSD patients lies in intent and outcome.

While my immediate family acknowledges this and even encourages me to continue my practice of bed rotting, I’m still quick to articulate that I’m OK mentally. Bed rotting for NMOSD patients like me isn’t driven by hopelessness or sadness but rather by physical necessity. When I spend a day in bed, I’m not shutting down emotionally. Instead, I’m recharging my depleted energy reserves. The goal isn’t avoidance but rather recovery.

It’s important to monitor mental health alongside physical health. Chronic illness and fatigue can contribute to feelings of depression, so I’m careful to make sure my bed rotting doesn’t start to feel more like emotional withdrawal than physical recovery.

It’s been a huge transition for me to recognize that rest isn’t a luxury but rather a form of treatment. I’m still learning to bed rot without guilt, but as I understand more about what my body needs, including time to heal and rest, I’m coming to terms with the idea that resting is a strength.

The next time you find yourself sinking into the comfort of bed rotting, remember that you’re not being lazy or indulgent. You’re giving your body the time it needs to recover from the invisible battles it’s constantly fighting. Bed rotting is a vital part of staying well with NMOSD and also a great excuse to purchase that cozy, soft bedding you’ve been quietly admiring.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.