How to Explain Your MS Fatigue to Others

Special thanks to our sponsors, Viatris & EMD Serono.

Introduction

You may have heard MS experts use the obscure-sounding word “lassitude” to describe the regular physical or mental fatigue that is unique to someone with Multiple Sclerosis. But chances are, if you use the word “lassitude” to explain your fatigue to others, you will get a blank stare. If you are hoping to communicate what you experience effectively, you might need some different strategies. After all, the more clearly you can communicate what you personally experience, the more likely your loved ones and friends will understand and be able to support you.

Here are some strategies that can help others understand the experience of living with MS fatigue.

Take the initiative to explain your experience

You don’t have to wait for others to ask, “What’s it like to live with fatigue on a regular basis?” or “How do you actually feel when you are trying to get ready for your day?”

You can be empowered to initiate the conversation and give others insight into your world. After all, your transparency will allow them to understand you better, have greater empathy on days you struggle, and help you in more specific ways.

Plan a time for an undistracted conversation

To create space for deeper conversations, ask your friend or family member to set aside time for a conversation where you can focus and have their undivided attention. Explain to them what the hardest parts of your fatigue are. Give them insight into what activities are hard as well as how you emotionally feel about it. Ask for their perspective on how your fatigue affects them.

Plan what you want to say in advance

Write, type, or voice dictate what you want others to understand. Pick out keywords or phrases you want to be sure you use in the conversation. You can even give your friend or family member a copy of what you’ve written down if that’s easier than communicating it verbally.

Use word pictures to illustrate your experience in a tangible way

You don’t have to come up with your own illustrations. Borrowing other people’s descriptions can be helpful!

Some examples might be:

• “It feels like I’m walking through molasses.”
• “It’s like fighting to stay awake after taking a sedative.”
• “It’s like going through my day while in quicksand.”
• “It’s like trying to walk around with 10 lb weights on your arms and legs.”

Develop a simple rating system or physical gesture to communicate your fatigue level in the moment.

On some days, you may even find the first four strategies too fatiguing. The reality is that MS fatigue can often include mental fatigue as well as physical fatigue. Communicating your fatigue level on a scale of 1-5 allows you to use little to no verbal communication on days when it’s hard to even come up with the words to say. For example, rate your energy level on a scale of 1 to 5 so you can express how you are currently feeling.

Why Communicating Your Fatigue Is Important

Taking the time and effort to help others understand your daily experience with fatigue can pay off. You will feel more understood and those around you can more specifically and effectively support in ways that are meaningful to you. It’s worth the energy to communicate!