Talking MS fatigue

 

Multiple Sclerosis (MS) fatigue is different to simply feeling tired after a bad night’s sleep or following exercise. MS fatigue is an overwhelming tiredness, that can’t be relieved by sleep. For people with MS, fatigue can often worsen as the day goes on, can be aggravated by heat or humidity and may emerge suddenly. This common symptom can have a big impact on a person’s life and may even stop them from functioning normally¹.

It can be very difficult to describe MS fatigue to those who have not experienced it - even amongst people with MS, fatigue can vary widely! As an invisible symptom, others may not understand the impact MS fatigue has and may even think you are exaggerating or it is an excuse. Some people with MS are even accused of having been drinking when they are in fact experiences MS fatigue.

Many people struggle to understand the impact of fatigue on your daily life; here are some tips for “Talking MS fatigue” with your colleagues, friends, family and healthcare professionals:

Talking to your boss or colleagues:

Your workplace is perhaps one of the most important places to let people know how MS fatigue affects you as it may impact the way you work. It’s possible that colleagues may even accuse you of being lazy or not pulling your weight when fatigue is stopping you from doing your best work. If MS fatigue is affecting you at work, it’s a good idea to set aside a small amount of time to have a discussion with your boss and your colleagues, to explain what MS fatigue means and how it may affect your work. Discuss with them the ways in which they can help and the ways in which you can adapt your work around fatigue, for example by adopting flexible working hours or working from home more often².

When talking about MS fatigue at work, it’s important to make yourself heard, but to remain professional. Here are some helpful words and phrases for these discussions:

Overpowering tiredness

Impact

Unpredictable

Lack of control

Understanding

Expectations

Pacing

Prioritizing

Special consideration

Flexibility

Talking to friends or family:

MS fatigue can sometimes creep into your relationships with family and friends. It may mean missing multiple family occasions or having to rearrange meeting friends. This may lead to friends and family members feeling upset, rejected or annoyed. To avoid this happening, arrange to have a chat with them to help them understand why MS fatigue means these things may sometimes happen. Once they know more about it, close friends and family could even be helpful in recognizing the ways fatigue is affecting you, that you haven’t spotted or have grown used to³.

When talking to friends and family, try to help them imagine what your symptoms are like by relating them to feelings they may have experienced. Helpful words and phrases for these discussions might be:

Jet lag

Hangover

Flu

Imagine

Support

Understanding

Patience

Talking to a doctor:

While keeping things simple will be important for talking to friends, family and colleagues, with your doctor, it’s important to be as detailed as possible when it comes to describing your MS fatigue. Changes in fatigue levels could provide clues into other problems and the doctor may be able to help you in managing fatigue. It’s a good idea to keep track of your fatigue levels in a diary which you can take to appointments with your doctor and they may be able to spot patterns. It’s also important to let them know if you think fatigue is affecting any of your other symptoms as well⁴.

Some helpful words and phrases for these discussions could be:

Better since…

Worse since…

Patterns

Change

Energy levels

Management

No matter who you are explaining MS fatigue to, it’s important to be patient – it’s hard for someone without MS to imagine what the fatigue is like, so encourage them to ask questions and learn more about it themselves too.

References:

1. Website ‘MS Trust’ Fatigue. Available at: https://www.mstrust.org.uk/a-z/fatigue
2. Website ‘MS Trust’ Working Life. Available at: https://www.mstrust.org.uk/life-ms/your-finances/working-life
3. Website ‘MS Trust’ Describing fatigue to others. Available at:  https://www.mstrust.org.uk/news/views-and-comments/describing-fatigue-others
4. Website ‘MS Focus Magazine’ Nine Tips for Talking with Your Doctor about MS Symptoms. Available at: https://msfocus.org/Magazine/Magazine-Items/Posted/Talking-with-your-Doctor