The Science of Boredom and Lupus

Chronic boredom is common for people with lupus. What can you do about it?

Chronic illnesses like systemic lupus erythematosus (SLE) can consume ones life;

• Such as the resting time where you are too fatigued or in pain to do anything, but your mind craves stimulation.  
• The times when you are in a hospital being treated and have nothing to do but wait.  
• Even the good days, where you can get up and do some things – but not a lot of things that you truly want to do.  

With chronic illnesses like lupus, the limited supply of energy and motivation is hard for otherwise healthy people to understand. Sometimes, these are referred to as “spoons,” but even when you have no spoons left to do anything, your mind can still be active and craving stimulation.  

People with chronic illnesses adapt, though. Some people with lupus are able to work full or part time, which provides money but also stimulation, socialization, and satisfaction. Volunteering is also a common occupation for people with lupus, for the same reasons. Others have hobbies that occupy and fulfill them that can be done with whatever limitations that SLE puts on them. These days, a lot can be done remotely, in bed, or on the phone, and there are, tools like ergonomic handles, that can help people with lupus work around their symptoms,  

But what about the bad days, when it’s hard to do anything but wait? What about when depression strikes and the motivation is just not there? What about when work is dull and repetitive and the body is not cooperating? What do you do when your body and medical advice tell you to slow down and rest, but your brain wants more? Fatigue and malaise are common symptoms of lupus. Sometimes, it can be a battle to do simple tasks like getting out of bed, walking between rooms, and taking a shower. 

What do you do then? 

The Science of Boredom and Lupus 

Managing lupus can be tricky. Even with the medical options available to people with lupus, doctors can’t treat one of the major challenges of lupus – boredom. Boredom and frustration come about when your mind wants activity and stimulation, but the body – or the brain – just cannot do it. 

Technically, boredom is defined as “restlessness combined with lethargy.” You feel like you can’t stay still, but you are unable to find a direction to focus that energy. You end up frustrated because that mental energy has nowhere to go. Sometimes, frustration is a great motivator. Other times, it’s just a pain.  

There are actually a few different types that can be defined: 

Situation-dependent boredom comes from a person being frustrated with a monotonous environment. In other words, everything is the same and the mind is not stimulated by their normal, everyday life anymore. People with this type of boredom crave variety and benefit from a break from their ‘normal.’ 

Situation-independent boredom is internal and has more to do with the person than the environment. They have difficulty in distracting or occupying themselves mentally in unstimulating situations, and so become frustrated. This is becoming more of a problem as we get used to having constant stimulation at our fingertips in the form of phones. This causes us to become oversaturated and fatigued, which we feel as a form of boredom. People with this type of boredom benefit from therapy and guidance that teaches them coping strategies for boredom. 

Purpose-related boredom is a frustration with a person’s current state of life because the person feels like they have no purpose or goal. They feel like their skills are not being used, or they aren’t making a difference. This can also be because someone has lost their drive or passion for something, and this loss is felt like boredom. People with this type of boredom need to figure out what will satisfy that need for them, and then find a way to do it. Some people are lucky enough to gain purpose through their job, but others find it through hobbies, volunteering, and activism. 

Psychosocial needs-related boredom is where the ‘boredom’ is actually a sort of starvation. Even introverted humans have a need for social interaction and human contact. When this is not met, people feel this social isolation as a sort of depressed boredom. Coworkers, applications like Zoom and Skype, and online forums or chat spaces can help — but for some people, only outside-of-work and in-person interaction will fully ‘nourish’ them. Hobby groups are a common way that people ease this need. Unfortunately, seeking out social interaction takes a lot of time, energy, physical mobility, and regular contact, which can be difficult to manage for people with lupus.  

What Can You Do? 

First, some might say that “a little boredom is good for you,” and they are not entirely wrong. We live in a world with constant stimulation and our brains are no longer used to getting a break. That’s not what we are talking about, though. We are talking about you not getting a psychosocial need met. Our brains need stimulation and our minds need enrichment. This is not only important for our subjective quality of life, but boredom can lead to worse clinical outcomes and can increase the risk of cognitive decline.  

Boredom and a lack of stimulation are not uncommon for people with lupus. Fatigue is a common symptom of chronic diseases, including lupus, and it can severely limit your activity levels. Autoimmune diseases like lupus can also directly affect your mental health. Symptoms like fatigue, brain fog, and even pain can be similar, outwardly, to symptoms of depression like low motivation, pessimism, and lack of enjoyment. It doesn’t help that chronic illnesses contribute to depression and anxiety, which then can make autoimmune disease symptoms worse. It’s a frustrating feedback loop, and you’re caught in the middle of it! 

Flexibility and adaptability is key to managing boredom with lupus. Your body won’t always let you keep to a predictable schedule, so being able to work at different times, reschedule, or switch up the way that you work or create as symptoms permit is important. With that said, what are your options? There are infinite options, depending on your symptoms, interests, and accessibility – but here are a few go-tos for many people with lupus: 

TV shows: As long as your eyes aren’t aching and you don’t have visual light sensitivity, watching TV shows can be a way to stay stimulated. Learning something new is a great use of this time, but it doesn’t have to be educational – go with what interests you and keep your show roster varied. Binging  

Reading: Reading books – whether physical ink-and-paper books, e-books, or audio books, is a stimulating activity, too. These days, there are many ways to read, too, so if your eyes are tired or you have eye problems, you can use a more accessible method. Looking into getting a screen reader can make web browsing more accessible, too. 

Hobby Groups: Doing tasks as a group, including exercise and healthy eating, can encourage these important acts of basic self-care, make them more engaging, and give you an opportunity to support others and be supported. Even if you do so remotely, such as in a phone or zoom call, this social interaction can break up your boredom and encourage proper care of yourself. A win-win, if you can handle the stimulation. 

Writing and Art: Creating something is a hobby for some, a profession for others, but most artistic mediums are low impact physically speaking. Digital art and watercolor in particular are easier on the wrists, and other mediums like colored pencil, pastel, charcoal, and acrylic are a little more taxing. Many people with chronic illnesses do fabric arts like crocheting, felting, and sewing. As for writing, that can be done with pen and paper, but also with computer programs. Ergonomic keyboards can make typing much easier on your wrists, and voice to text programs work very well.  Scrapbooking and journaling are also good options – and all of these can be a way to connect with a community of like-minded people. 

Social Media: Social media like youtube, pintrest, tiktok, X, and Facebook can be very beneficial if done in moderation. They have the power to connect you to people around the world or near you and help with isolation. You can find interesting activities or events, or just watch a lot of content. Keep content varied, keep an eye on your visual and mental fatigue, and take breaks – for all of its benefits, it is very easy to get sucked into a social media rabbit hole. 

Video and Board Games: Gaming is both low impact and stimulating, and there are many types of both games out there.  

Puzzles: Puzzles are fun, interesting, and take a while to complete. Putting the pieces together is a low-impact, real-world activity that can help with coordination and problem solving. Plus, you have an accomplishment at the end to show off! 

Outdoor time: Few things can beat getting out of the house and into the fresh air, if you have access to that of course! Walking is a great hobby for people with lupus if they can manage it, but even just sitting outside on a porch can help you feel less constrained and isolated. 

Music: You can also just vibe and listen to music. Whether it’s a track you’ve listened to hundreds of times, or something brand new, music affects the mind in amazing ways. Get good headphones and don’t turn up the volume too loud.  

You can read more about fun activities to do with lupus here!  

Self-Care, Alleviating Boredom, and Lupus 

Feelings of depression and isolation are common for people with lupus – nearly 25% of people with lupus also deal with this, so you’re not alone. 

Self-care activities can be given double purpose as boredom-alleviating activities. Even menial or frustrating chores like cleaning can be made fun and engaging, either by making a game out of it or by using it as a chance to listen to podcasts. Try to make the cleaning as pain-free and lupus-friendly as possible using the tips and tricks here. Try doing it in short bursts instead of all at once, prioritizing the most essential areas like the kitchen and bathroom.  

Boredom can also be seasonal. This is not an illusion – not only do activities and temperatures change, but so does air quality and light levels. Depression, including seasonal depression, can contribute to boredom, so its important to treat them – or at least know that they are there so that you can plan accordingly. Usually, seasonal depression is treated with sun lamps, though antidepressants can also be used. 

Exercise can be fun and engaging, as long as you don’t push yourself too far beyond your limits. Having a yoga routine or a workout can help you with physical fitness and stamina, and also stimulate the mind. If you have problems with the boredom of repetitive tasks, you can try ‘mixing it up’ from time to time with new ideas or exercises. 

A healthy lifestyle can help with fatigue because it gives the body what it needs and a chance to heal. It can also be stimulating to the mind, too.  

However, just be sure not to overdo it. 

Engage in a Community 

Connecting to others is a basic human need, and even introverts long for company from time to time. Although a lot of social interaction can be draining, small, regular amounts can help stimulate the mind and let you feel connected. 

Group activities are a good way to both connect and keep active. There are an infinite number of group activities, but a nature group, a group that gets together to visit places in your hometown or city, gaming groups, a gym or indoor rock-climbing group are all examples. Hobby groups like crocheting circles, painting classes, or reading clubs are lower impact options, too.  Activism or community service are also a possibility. A group of people with chronic illnesses will be more likely to have activities that are the right activity level for you and won’t drain your physical battery too much. However, depending on how you feel, other groups of people can be feasible. 

Social media is a great way to communicate with other people with lupus and other chronic illnesses. You can find support and company here, and also share your interests and other activities. Be careful of social media – it can be very easy to damage your mental health with online rabbit holes. Online or physical penpals are a great way to stay connected and stave off boredom. Social media is great for communicating with others, and it’s a way to make a difference. However, it also can suck you in, so use with care. 

What If I Can’t Do Anything? 

Sometimes, there’s nothing that can be done. The fatigue is too much, and even doing the basic necessities of living and obligations is a trial. That’s okay. There are still options. You don’t have to be endlessly productive. Sometimes, you have to accept what’s happening. 

Western society prioritizes being productive ahead of self-care, demonizes rest and recovery, and is full of stimulation and anxiety. We are so used to constant stimulation and activity that slowing down and stopping feels painful. However, the only way we can have the energy to do anything is through rest. Sometimes, that is exactly what you need to do.  

Here are some tips on staying optimistic despite it all!  

A Lupus Warrior’s Takeaway 

Dealing with boredom is important to your quality of life and should not be neglected.  

Of course, there will be the days when you are too exhausted by lupus or life to do anything at all, even being bored. At that point, the bare necessities will have to be enough, and will hopefully lead you to a better day, spoonwise. If nothing else can be done, sleeping is sometimes the best option – it occupies the mind and body, and might help restore energy to try again later.