5 Things Not to Say to People with Chronic Fatigue Syndrome

Chronic fatigue syndrome,†or myalgic encephalomyelitis (ME),†is one of those disorders that many people may joke about having, but the reality for actual sufferers is no joke at all. Because the main symptom, fatigue, is something that everyday folks experience every now and then, they don’t necessarily understand that those with a diagnosis experience much more severe and long-lasting bouts of fatigue, coupled with headaches, aches, flu-like symptoms, concentration issues and even enlarged lymph nodes.

Because the disorder is so misunderstood, sometimes people say things to sufferers that are downright insensitive or inaccurate. Here are some comments that are unhelpful and should be avoided when talking with people with chronic fatigue.

1) “It’s all in your head.”

Anyone with an invisible illness can attest to the hurtfulness of these words. It’s just not true. Just because there are no visual cues that someone is going through a difficult situation (“Oh, you have a cast on your arm! You must be in pain, I’m so sorry”) doesn’t mean they are imagining their symptoms.

One of the most frustrating parts of being diagnosed with chronic fatigue is the long period before diagnosis, while people and their doctors are trying to figure out what’s going on. Many people who eventually figure it out have told themselves “maybe it IS all in my headÖ” along the way. Yet, they persevered and got to the bottom of what was wrong. Their experience shouldn’t be invalidated by such a dismissive comment from someone on the outside.

2) “We all get tired, you know.”

While this is true, it is deflecting attention from the person who’s sharing their genuine troublesóminimizing someone’s suffering is never helpful. Fatigue is a universal experience, but once it persists to the point of affecting someone’s ability to function, it must be recognized as something bigger than just being sleepy. Anxiety is a universal experience, but there are still anxiety disorders. Sadness is a universal experience, but there are still depressive disorders. No two people and their experiences are the same and it is vital to listen to others to fully understand what they are going through.

3) “Why don’t you try ___”

Whoa, whoa, whoaÖ unless that sentence ends with “calling this great doctor who specializes in treating chronic fatigue,” the suggestion is probably not going to be helpful. Maybe meditation, certain supplements, counseling and striving toward a positive mental attitude could be generally beneficial, but chronic fatigue is complicated and should involve the attention of a medical professional.

4) “You don’t look sick.”

Anyone who stops and really thinks about what this comment is saying will quickly realize that the idea of sickness always having an outward appearance is ludicrous. People living with invisible illnesses struggle with this perspective regularly. Before making such a comment, take a moment to reflect on how invalidating it could be for the other person to hear it.

5) “It must be nice to get all those days off.”

There are two ways to break this comment down: either the person who said it is ignorant to what chronic fatigue is and wants a day off for themselves or they are being mean-spirited and passive aggressive. Either way, it’s hurtful to hear. The need†to take time away from other priorities to take care of personal health is no walk in the park. And suggesting that someone is using an illness to get away with playing hooky is no way to treat a friend.

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Photo credit: Thinkstock

114 comments

Marie W
Marie W2 months ago

thanks

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John B
John B7 months ago

Thanks Katie for sharing.

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heather g
heather g7 months ago

Many people have closed minds and are not open to learning anything new.

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Mia G
Past Member 7 months ago

Thanks

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Leanne M
Leanne M7 months ago

Roslyn - your comment shows both a lack of compassion and a lack of education. You should not judge others for something that you haven’t experienced.

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Roslyn M
Roslyn M7 months ago

Chronic fatigue is caused by people feeling sorry for themselves.

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Laura H
Laura H7 months ago

Andrea B.; I have to differ with you. I've been a vegetarian since 1976; probably about 90% vegan until I went 100% vegan in 2006. I was diagnosed with CFS in 1992; I have family members with various degrees of the illness so in my case it appears to be a hereditary issue...

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Stephanie s
Stephanie Y7 months ago

Thank you

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Andrea B
Andrea B7 months ago

Go healthy Vegan.
There's no Vegan with Chronic Fatigue out there - this should tell people something.

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Angelika K
Angelika Kempter7 months ago

Thank you for sharing

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