• CFS is a serious systemic illness, with a trivial-sounding name. It has a profound affect on a persons quality of life, is a source of persistent physical discomfort and cognitive decline.

 

  • Pushing past our limits REALLY messes us up. People tend to assume that, like healthy people, we could improve by exercising. This is actually the furthest thing from  the truth, and nothing causes a person to worsen as much as exertion does. Exertion is not limited to physical exercise. Mental and emotional expenditure can also wipe us out. Staying up late can too. When we do crash, we can be bed-bound for days, or weeks. Some people are bed bound for years.

 

  • We literally want to die. The name of the blog is not hyperbole. While many people learn to cope, right-to-die is a common theme on bulletin boards and forums. Our suicide rate is 7 times higher than average.

 

  • We mourn ourselves. CFS changes our personality, and we miss our old lives and old-selves every day It’s like being a ghost at your own funeral where nobody else shows up.

 

  • We perceive a lack of concern from those around us, and it hurts. Our loved ones often give us subtle signs that they don’t believe we’re ill, or that we’re exaggerating, or that we’re lazy. Even the people that really do care, usually don’t “get it”.

 

  • It is LONELY. Our friends drop away because we don’t have the energy to maintain relationships, and they tend not to understand why because even when they do see us, it’s usually only because we’re having a good day.

 

  • Employment is tricky. 1/3 of people with CFS are unable to work at all. People that can work often have to change careers and work fewer hours because of cognitive and physical limitations.

 

  • Your advice, however well-intended, is rarely useful. People want to be helpful and offer guidance, but more often than not, we’ve already know about what you’re recommending, have tried it, or it’s just not practical.

 

  • Saying “I’m tired too” is belittling and invalidating. Our symptoms go far beyond just “being tired”, and while everyone experiences fatigue, for people with CFS, it never leaves us.

 

  • Sleep is a big problem. Having CFS adds the cruel twist of being utterly exhausted AND unable to sleep. Being “tired but wired” is a symptom of CFS. While sleeping is hyper-critical for us, chronic anxiety and the constant uncomfortable buzzing of our nervous system makes it difficult to sleep. Our sleep tends to be drug-induced, disrupted, and of poor quality. Getting a good-night sleep and waking up refreshed is a luxury we’d kill for.