Between 75 percent and 95 percent of people with multiple sclerosis (MS) have fatigue, and yet fatigue is often difficult to explain to other people. Fatigue in MS can be caused by inflammatory injury to the brain and central nervous system. Fatigue may also be due to sleep interruption, depression, medication side effects, and disability as MS progresses.
Many people with MS consider fatigue more problematic than physical limitations or pain from the condition. Describing fatigue to loved ones, friends, and co-workers can be frustrating, as MyMSTeam members express:
Talking about fatigue can also be difficult for people with MS due to cognitive problems that can affect memory, thinking, and the ability to find words. One MyMSTeam member described struggles with communicating. “I lose my ability to speak quite often when I am emotionally stressed or have a flare-up. My words slur, stutter, or I mispronounce a lot,” he wrote.
Another member said, “I couldn't for the life of me explain accurately what was going on. The words just wouldn't come. She prodded me along and reminded me that I am a nurse, so I should be able to explain it all. I got SO frustrated. Not at her, at myself.”
Difficulty with language and communication functions, including verbal fluency, can occur with MS. A study of 42 people with MS showed that approximately 55 percent had impaired communication skills.
Friends, family, and colleagues may not understand how MS fatigue varies from regular fatigue. MS fatigue has been found to be more severe than fatigue in other chronic conditions and is sometimes referred to as lassitude. You can tell your friends and family about the characteristics of MS fatigue that are different from common fatigue. These include:
People with MS often describe how they experience fatigue in metaphors, which can be helpful when explaining your symptoms. Below are some descriptions from MyMSTeam members:
The Spoon Theory is another helpful tool for explaining MS fatigue to family and friends. “The Spoon Theory” is a popular essay written by Christine Miserandino, who has lupus. In the essay, Miserandino explains how she found a way to tell a friend about living with limitations caused by fatigue, using spoons as units of energy. People without health conditions may have unlimited spoons to give away, but that’s not the case for people with chronic illnesses like MS.
If each day you only had a handful of spoons, and every task required a spoon, you would have to carefully ration your energy. Getting dressed, making breakfast, or standing at a bus stop all use up energy for people with MS. Each day requires tough decisions about how to use your spoons before your energy levels run out.
For some people with MS, the Spoon Theory has become a way to think about fatigue. It can help people in their lives visualize fatigue. Many MyMSTeam members have found it useful. “I love using the ‘Spoon Theory’ to explain to people how I have to plan each day,” said one member.
“I use it with my family all the time now, and they know exactly where I stand, how I feel, how my energy is,” said another member. “I even use it with my doctor. It's brilliant!”
Talking to colleagues at work about fatigue can be different from talking to friends and family. Some workplaces are more formal than others, and privacy issues are also a concern for many people with MS. Some things to consider:
If you choose to discuss your fatigue with colleagues or supervisors, it can be helpful to prepare carefully what you want to say. Here are some tips:
The Americans with Disabilities Act (ADA) legally protects workers who may have limitations due to a disability. Fatigue can be a disabling symptom and may require your employer to provide reasonable accommodations. You may want to first talk to someone in your company’s human resources department about questions related to MS fatigue and your rights in the workplace.
MS is an unpredictable condition. People with MS are used to having their sense of well-being change unexpectedly. Fatigue can come and go without any apparent reason, even after a good night’s sleep. Sometimes that means schedules need to change, which can be frustrating for other people in your life. As one MyMSTeam member said, “We all have the most amazing plans and then, WHAM, MS says, ‘Oh no, we're not doing that today.’”
When you make plans, it may help to let others know ahead of time that you cannot always predict MS fatigue. Explaining in advance how MS fatigue can feel and how it can sneak up on you may help them understand when you have to make last minute changes.
It’s important to help family members, friends, and colleagues understand these ups and downs. Sometimes it helps to let friends and loved ones know if you need emotional support for your fatigue. Despite the difficulties of fatigue, good days can be appreciated and enjoyed.
Talking about fatigue can be especially challenging while you are experiencing fatigue or not feeling well. If possible, try to find time to talk about your fatigue when you have energy and feel confident. Write down your thoughts ahead of time, so that when you talk about your fatigue you will be sure to communicate everything you want to say.
Remember that it's also important to tell your doctor if you're experiencing fatigue. They can offer medication and treatments that may help ease your symptoms.
At MyMSTeam, you can join more than 164,000 people who are sharing their experiences with MS and the challenges of living with fatigue.
What happens when you try to explain fatigue to a friend or family member? Have you ever had to explain MS fatigue to a co-worker? Add your thoughts in a comment below or go to MyMSTeam today.