Five Things You Should Never Say to Someone with Chronic Fatigue Syndrome
It is extremely difficult to suffer from an illness like chronic fatigue syndrome (CFS) both physically and emotionally. While awareness has improved dramatically over the past 20 years, there are still many doctors and society in general who do not believe this debilitating illness is real. If you have been fortunate enough to have a doctor, family and friends who believe you are truly ill, there are still many stereotypes and misconceptions surrounding CFS.
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.