Five Things You Should Never Say to Someone with Chronic Fatigue Syndrome
July 2, 2009 by Sandy Robinson
Filed under ME/CFS
I submitted an article for a contest tonight to Health Fitness How To and wanted to provide a link for all of you to check it out! I talk about several of the comments and remarks we receive by people who don’t understand CFS. I hope you enjoy it and please feel free to link to it from your site and you can also click on the link at the end of this post and it will take you directly to the site it is posted on. At the end of the article, you can click on Article Source and from there you can copy and paste the entire article and include it on your blog or website.
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.
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Published on our blog!! I hope you rock that contest! It’s an awesome article.
Thanks,Andrea! I appreciate that!
Outstanding!! This is a keeper!
Could not have said it better. want to distribute to EVERYONE including some Physicians!!
A P.S. to my prior comment. When I used to socialize (which was extremely difficult), I got the #3 comment, particularly from one individual. “Well you look good”. So – what exactly does that mean. I would just reply “Looks are deceiving”. She said on one occasion, “You say that all of the time”. So, what exactly should I have told her, something along the lines of “You are a moron, and I cannot waste my energy and this short time of an outing convincing you of what is going on behind the exterior of this facade of what I am presenting on the outside, which is exhausting, and from which I will bear negative consequences?” UGH!
Now some years later, the same woman emailed me this past week and said how sorry she was to learn of how deeply I am suffering and how amazed she is at my spirit. Some people come around; others do not.
…….and it’s oh so difficult to hear from family to just stop w/all the doctors and get on with my life. If only it were that simple.
Thank you, Sandy, for sharing this.
I don’t have CFS, but I have lupus, and some other AI diseases… so I get the tiredness….
My response to #2 seems to go something like this “You’re right, I don’t have cancer, and cancer patients either die or go into remission… for me, it’s a never ending struggle, I’ll have this the rest of my life, and there are days I wish it were cancer so that I could die rather than being tired and hurting all time… I just hope my meds will put me in remission for awhile, even though it’s likely I’ll come back out of remission at some point.”
As for the rest, my responses vary, but I wish people would learn that none of these are proper to say to someone with a chronic illness.
Thank you so much for sharing all of these!!
how about “if you just go get some exercise, you’ll have more energy.”
“you’re getting too much sleep and it’s making you tired.”
How about I have a cure for FMS/CFS that I want to share with you. It’s like do you know what chronic is do you know the meaning of chronic? If there was a cure wouldn’t doctors know about? Unbelievably, it says this right above this article sorry but this really upsets me. i want to know please how you feel about this or is it me just being crazy?
THANK YOU for your article! I have been fighting CFS/Fibro/Permanent nerve damage due to a serious injury I sustained in 2004 in my profession as a firefighter/paramedic, of course my profession ended due to the injury & I’m no longer able to work. It’s amazing how cruel people can be with their comments. Even a relative had the audacity to say “oh,it’s all in your head!” I am 58 yrs. Young BUT feel older than dirt due to the pain! It still amazes me that many physicians fail to recognize or acknowledge our symptoms ARE REAL. They too can be very cruel. It took our moving from SC to WY Dec.2007 to find a wonderful physician who DOES know & understand the ramifications of these diseases. He once told me: “Kathy, I cannot cure you, BUT I will do everything in my power to help you & try to give you some quality of life while you are here!” Every day I thank God for him AND also for my loving husband, who walks “thru this fire” with me every day & gives me the reason to “keep going” & not give up! As my husband says: “Honey, you’re still green-side up and that’s a good thing–we will fight this TOGETHER, as long as it takes!!!!”