Chronic fatigue syndrome (CFS) is a complex and often misunderstood medical condition characterized by extreme fatigue or tiredness that doesn’t improve with rest. People with CFS experience debilitating fatigue that is not relieved by sleep and is exacerbated by physical or mental activity. This fatigue significantly interferes with daily activities and quality of life.
CFS is also known as myalgic encephalomyelitis (ME) or systemic exertion intolerance disease (SEID). It affects up to 2.5 million Americans, the majority being women. The exact cause of CFS is unknown but some theories include viral infections, immune system abnormalities, stress, and genetic factors.
Living with CFS can be isolating and challenging, both physically and emotionally. In addition to the lack of energy, people with CFS often deal with symptoms like muscle and joint pain, impaired memory and concentration, insomnia, dizziness, sore throat, and tender lymph nodes. There is currently no FDA-approved treatment for CFS.
Understand That CFS Is a Real Medical Condition
One of the most hurtful things someone can say to a person with CFS is doubting or questioning the validity of their illness. Comments like “It’s all in your head” or “You’re just lazy” are offensive and stigmatizing. CFS is a recognized medical condition by organizations like the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and World Health Organization (WHO).
CFS is not “made up” or psychological. Research shows there are measurable abnormalities like elevated inflammatory markers, abnormalities in brain structure and function, altered gene expression, and more. While mental health issues like depression can commonly coincide, they do not cause the core symptoms of CFS.
Telling someone their medical condition is imaginary or that they just need to “push through” their symptoms is minimizing and invalidating. It implies the person is exaggerating or faking their illness. If you don’t understand CFS, educate yourself about the disease before making uninformed judgements. Believe the person’s experiences and acknowledge their condition is real.
Don’t Tell Them to “Just Get Some Rest”
Rest may help healthy people regain their energy, but it does not resolve the exhaustion and post-exertional malaise experienced in CFS. People with CFS are unable to recover their energy levels even after extensive rest. In fact, prolonged bed rest can actually make symptoms worse.
Telling someone with CFS to “just get some rest” shows a lack of understanding about the condition. Their bodies do not respond to sleep and rest like healthy people. Comments about resting imply the person is simply tired or lazy when the reality is they are seriously ill and fatigued.
Avoid giving simplistic advice about resting, it does not help. Instead, validate that you understand rest alone cannot make them better. Ask what you can do to accommodate their limited energy levels. Offer practical help like shopping, transportation, household tasks, and moral support.
Don’t Tell Them to “Have You Tried Exercising?”
Exercise intolerance and post-exertional malaise are hallmark symptoms of CFS. Even minor physical exertion can exacerbate fatigue and other symptoms that can last for days or weeks. That’s why the advice to exercise is one of the worst things you can tell someone with CFS.
Aerobic exercise programs like jogging, biking, or swimming are not only unhelpful but can seriously harm patients. Pushing through exercise and activity will almost certainly trigger a crash as the body cannot recover. Well-meaning encouragement to exercise disregards the post-exertional malaise and implies being sedentary is a choice rather than a necessary adaptation.
Instead of exercise suggestions, understand activity limitations are required to manage energy levels. Support appropriate rest and pacing of daily activities. The key is staying within one’s “energy envelope” to avoid crashes from overexertion.
Don’t Compare Their Fatigue to Yours
Saying “I’m tired too” or “I wish I could sleep all day” is a dismissive comparison. Everyone experiences normal fatigue and tiredness at times. But the profound exhaustion of CFS is not comparable to day-to-day tiredness. It is all-consuming and unrelenting.
Comparing your transitory fatigue to their permanent state invalidates and minimizes their experience. While empathy is good, equating ordinary tiredness with CFS downplays the severe functional impairment it causes. Avoid comparing your situation as it disregards the serious and chronic nature of their exhaustion.
Don’t Tell Them to “Push Through It”
For healthy people, pushing past fatigue may work temporarily. But CFS is not just being tired – it is an incapacitating lack of energy and stamina. Pushing through symptoms will inevitably make the person crash and worsen their condition. It can even cause relapse for months or years.
Comments like “no pain, no gain” or “what doesn’t kill you makes you stronger” imply the person is not trying hard enough. In reality, they have learned to operate within narrow limits to avoid crashes. Pacing activity is essential. Urging them to push through their boundaries disrespects their lived experience with managing CFS.
Don’t Tell Them to “Stop Focusing on It”
Chronic fatigue is not something that can just be ignored away. People with CFS cannot simply “stop focusing” on their symptoms. Severe exhaustion, widespread pain, cognitive impairment, and more require conscious adaption and management in daily life.
Telling someone not to focus on their illness is both unrealistic and insensitive. CFS is not a minor ailment, it is a disabling disease. Patients do not have the luxury of ignoring their symptoms. Comments like “stop focusing on it” minimize CFS and put blame on the patient for their condition.
Don’t Say “You Look Fine Though”
Since there are often no visible signs of illness, a common misconception is that people with CFS look healthy. But CFS causes major symptoms and disability even if they appear fine on the outside. Assuming someone looks “just fine” invalidates their internal suffering.
People with CFS pace their energy to appear as functional as possible in public. Comments about looking well despite their complaints underscore the public misperception about CFS patients being lazy or exaggerating. Avoid assumptions based on external appearance. Take their word about their experience.
Don’t Give Medical Advice
Unqualified medical advice is both ignorant and potentially harmful. CFS treatment should only be managed by medical professionals experienced with the condition. Telling someone to take supplements, get acupuncture, or “boost their immune system” implies you know how to treat their condition.
While it’s good to care, amateur medical suggestions disrespect the doctors who understand their case. CFS treatment plans are customized and consider many factors you’re unaware of. Avoid the temptation to play doctor. Instead, listen and offer emotional support.
Don’t Tell Them to “Change Their Attitude”
CFS has profound physical causes and consequences. No amount of positive thinking or trying to “change your attitude” can improve the disease. While attitude matters, the underlying medical problems do not stem from being negative or not trying hard enough.
Telling someone their attitude is the problem comes across as blaming them for their illness. Rather than putting the onus to “think positive”, show empathy for the physical struggle they face. Validate how hard it is to cope with CFS. Offer hope without diminishing the medical reality.
Don’t Say “You Just Want Attention”
Accusing someone of making up or exaggerating their illness for attention is offensive and stigmatizing. People with CFS desperately want recognition and validation – but not as “attention seekers.” They want support, accommodation, and healthcare solutions for an overlooked condition.
Dismissing their experience as wanting attention attributes malicious motives. In reality, people with CFS want their profound disabilities and suffering to be understood, not dismissed. Be compassionate and take them seriously rather than implying they have ulterior motives.
Don’t Give Deadlines and Demands
People with CFS require flexibility given their limited and unreliable energy levels. Giving them deadlines and demands caters to your needs rather than the realities of CFS. Even basic tasks require enormous effort and can’t be scheduled easily.
Avoid saying “I need this done by…” or “you have to…” as it adds more pressure and expectations. Instead, ask how you can assist them in ways considerate of their condition. Accommodate their needs and be patient rather than demanding.
Don’t Take Their Limitations Personally
When a person with CFS declines an invitation, cancels plans, or sets limits, it’s essential not to take it personally. Their condition obligates them to make difficult choices about how to use their energy. Last minute cancellations can happen due to unpredictable symptoms.
Rather than viewing their limitations as rejections or signs you are not valued, recognize CFS requires living within strict energy constraints. Be supportive without taking offense. Cheerfully offer flexibility and alternatives like lower-energy gatherings.
Don’t Imply They Are Exaggerating
Saying someone is “overreacting” or making comments like “it can’t be that bad” implies exaggeration. People with CFS downplay their challenges more often than exaggerating them. Disbelief or suspicion about their complaints causes further harm.
Avoid casual questioning like “are you sure you can’t do this?” Faced with severe CFS, activities of normal life become monumental tasks, not optional choices. Take their word rather than subtly or overtly questioning if they’re truthful.
In summary, what not to say:
- “It’s all in your head”
- “You’re just tired/lazy”
- “Have you tried exercising more?”
- “I get tired too sometimes”
- “Just push through it!”
- “Stop focusing on it so much”
- “You look fine though”
- Unqualified medical advice
- “Change your attitude!”
- “You just want attention”
- Deadlines and demands
- Take limitations personally
- “Are you sure you can’t…?”
Do’s and Don’ts Table
| Don’t | Do |
|---|---|
| Invalidate their condition | Validate their condition is real |
| Simplistic rest advice | Understand rest alone doesn’t help |
| Suggest exercise | Respect their activity limits |
| Compare your fatigue | Recognize CFS fatigue is profound |
| “Push through it” | Respect their need to pace themselves |
| Minimize focus on illness | Appreciate constant adaption required |
| Comment on appearance | Believe their experiences |
| Give amateur medical advice | Offer emotional support |
| Blame their attitude | Empathize with their physical struggle |
| Accuse them of exaggerating | Take them at their word |
Helpful Things to Say Instead
Rather than the common unhelpful phrases, choose words that validate their condition, respect their limitations, and offer support. Here are some positive suggestions:
- “I acknowledge your condition is very challenging.”
- “I’m here to listen if you want to talk.”
- “I can only imagine how hard this must be for you.”
- “I appreciate you sharing your experience with me.”
- “Please let me know how I can help or accommodate you.”
- “I respect the ways you need to adapt and pace yourself.”
- “I admire your strength in coping.”
- “You have every right to set boundaries and say no.”
- “I want to understand. Help me learn more about CFS.”
- “You know what’s best for you. How can I support that?”
Conclusion
CFS is a complex medical condition with life-changing impacts for patients. While friends and family aim to help, inappropriate or dismissive comments add to the challenges of living with CFS. Avoid invalidating, blaming, amateur medical advice and other unhelpful phrases.
With empathy and education about CFS, we can support loved ones in more constructive ways. Validate their condition, respect their limits, accommodate their needs, and offer encouragement. Let your words provide comfort, not additional burden.
