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Multiple Sclerosis (MS) Fatigue

Tips for support people

​​​​​​​​​​​If you are a partner, parent, family member, friend, or support person of someone living with MS, understanding more about MS fatigue and managing fatigue symptoms can help you, too.

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As you learn more about MS fatigue and how it affects people living with MS, you'll find strategies that work well for your situation. Recognizing their fatigue and offering an action to help manage that fatigue can be very relieving. Here are some ideas to get started.

  • Recognizing the zone of fatigue a person living with MS is in can help you find and use the best strategy to manage their fatigue.
  • As a support person, you can help the person living with MS to list and prioritize the tasks they need to do. Ask questions together like “what needs to be done," “what do I want to do," “what can I delegate to others," and “what is not important." 
  • Asking for and accepting help is a tough thing for anyone. Someone living with MS may not want to ask you for help, even if they would benefit. Sometimes offering to assist in a small way is helpful. Don't assume they want help, but always offer help if you are able. And don't forget that you are allowed to ask for help as well, especially if you are taking on additional duties.
  • If the person living with MS has trouble communicating, remember that the most important part is getting the message out, not using specific words. Once you have understood their message, then move on. Become comfortable with silence in conversations. Allow a few seconds of silence for the person living with MS to think of words. Avoid making statements like “just spit it out" or “hurry up."
  • Someone living with MS may avoid social activities like going out for supper, shopping, or going for coffee. Do not take this personally and instead recognize that these outings take energy, and that the energy levels may not be there at the time. Offer to reschedule activities like this.
  • Encourage the person living with MS to not be afraid to ask for help. Give them ideas like asking for help from a store employee to put items in a cart or carry bags, or taking a friend to help with shopping and driving.
  • When talking with someone living with MS about their MS fatigue, refer to specific behaviours. What have you noticed they are doing that demonstrates fatigue? Be factual and specific.
  • When you notice someone living with MS is in a “brain fog," keep conversations brief and positive. Share what you want the person to do, not what you want them to stop doing. If needed, repeat what you said and allow time for messages to sink in. It's OK to ask the person living with MS if they need things to be written down, repeated, or summarized.

Burnout

When you support a person living with MS, you might feel like you need to take on more responsibilities, which can lead to burnout. Some people describe this as feeling “stretched too thin."

Changing roles and adjusting to new situations can lead to a variety of emotions and reactions. This includes both difficult emotions like grief, loss, or feeling overwhelmed and more positive feelings like satisfaction, meaning, and purpose. You may need to adjust your expectations of what you and the person living with MS can do. If you are experiencing any of these challenges as a support person, you are not alone. 

Signs of burnout can include:

  • not being able to ask for help
  • feeling angry towards the person you are caring for
  • losing contact with friends
  • not participating in your favourite activities
  • feeling helpless and a lack of control
  • feeling sad, tearful, and hopeless
  • exhaustion
  • difficulty sleeping
  • trouble concentrating

To prevent burnout:

  • Learn about the MS diagnosis and what to expect.
  • Ask for help from family and friends. Advocate for yourself as well as the person you are caring for.
  • Look into and use respite services. In Alberta, call 211 to find programs or services near you.
  • Focus on positive events.
  • Connect with other support people or reach out to the MS Society in your area.
  • Recognize your own limits.
  • Plan in advance.

If you are experiencing symptoms of burnout, help is available. Call Health Link at 811 anytime, day or night, for support. You can also talk to your healthcare provider, friends, and family.​​​


Current as of: September 14, 2023

Author: Calgary MS Program - Allied Health