Chronic fatigue syndrome is a complicated illness that affects the brain and multiple areas of the body.   Some of the major symptoms include extreme exhaustion, debilitating fatigue, post exertional malaise, pain, sleep disorders, short-term memory problems, confusion, cognitive dysfunction, sore throat, hormonal deficiencies, headaches, irritable bowel syndrome,  tender lymph nodes and multiple  chemical sensitivities to name a few.

CFS can be a difficult illness to diagnose because the severity of symptoms fluctuates among each patient.  The only way to diagnose CFS is through eliminating all other possible illnesses and by following the CDC diagnostic criteria for CFS.

I have lived the past 20 years trying to learn how to cope with chronic fatigue syndrome and the numerous symptoms that affect every aspect of my life daily.  Trying to cope with the misconceptions, rude remarks and insensitive comments is almost as bad as dealing with the physical whirlwind of CFS.   As a patient myself, I know that what I would like more than anything, besides a cure, is to be understood.  Hopefully my list of what not to say to someone with CFS will help educate society and gain compassion for all of us suffering from this chronic disorder.

1.  “I’m tired all of the time too.”

CFS is much more than tired.  The exhaustion is so severe that just taking a bath or getting dressed can take every drop of energy a patient has.  A simple, routine task that most people do without even thinking about can put a CFS patient in bed for days and sometimes even weeks.

2. “At least you don’t have cancer.”

Did you know that CFS patients suffer as much as AIDS patients, cancer patients and those suffering from end-stage renal failure?  Telling a CFS patient they could be worse off is like telling them they aren’t seriously suffering.

3. “You don’t look sick.”

When I hear someone saying this I always wonder what “sick” is supposed to look like.  There are many illnesses out there where the patients are severely ill yet you would never know it to look at them.   When someone is severely ill and is told they don’t look sick, the comment is received as though their illness isn’t real.

4. “If you just had a positive attitude and would tell yourself you are healthy you could get well.”

I do believe that a positive attitude is necessary in life, especially when you are suffering from a chronic illness, but it will not cure someone.   The theory of acting healthy to be healthy can be extremely detrimental to a CFS patient.  We can’t pretend and carry on like a normal healthy person because our bodies are not physically capable of doing this for any length of time.

5. “Someone as young as you can’t be this sick all of the time.”

CFS does not age discriminate.  It can affect anyone at any age of their lives from childhood to senior citizen.  There are many of us CFS patients who became ill very young and have missed out on way too much of life because we are so sick.  You don’t have to be old to be disabled.

CFS affects millions of people worldwide.  It’s time for a cure, understanding, and compassion.

This diagnosis is of little comfort to patients, as it’s a meaningless term that describes the symptoms without any insight as to their cause. Adults who suffer from Chronic Fatigue are often unable to complete their daily tasks. They may be forced to miss work or important events.

Often, sufferers of Chronic Fatigue cannot even stay awake throughout the day. Because Chronic Fatigue is not yet understood, many people believe that it is a “made-up” disorder. Sufferers are often accused of simply being lazy or dramatic.

Lara, a 51-year-old office-worker in Studio City, CA, was diagnosed with Chronic Fatigue six years ago, after recovering from mononucleosis. “It was like I never got better,” Lara explains. It’s well after noon, and Lara is still in her pajamas. Lara has been able to work sporadically since her diagnosis, but she cannot support herself with her reduced hours. She relies on her husband’s unpredictable work as a screen-writer to pay her for rent, groceries, and mounting medical bills.

“I’ve been to my doctor, several specialists, a nutritionist,” Lara says, her voice shrill. “I’ve tried yoga, vitamins, B12 shots, antidepressants, even. Nothing helps. No one can help me.” Many of Lara’s friends have abandoned her, claiming that Lara is making up her symptoms for attention. “It’s been a nightmare,” she says, falling into her couch.

Luckily, Lara is not alone. And, as more people seek treatment for their Chronic Fatigue, doctors are able to gather more information about the mysterious syndrome. Also, the current version of the Americans with Disabilities Act allows some people with Chronic Fatigue to qualify for government-outlined accommodations like reduced work hours, medical leave, and opportunities to work from home. People like Lara do have options, as long as they know where to look.