It's a sad truth -- one of the hardest things about having chronic fatigue syndrome (CFS or ME/CFS) is getting people to understand it. Once they hear the name, most folks think they know exactly what it is: "Oh, you're tired a lot. Yeah, so am I."
One of the most telling things I've ever heard about the severity of this illness came from Dr. Nancy Klimas, one of our leading researchers, who treats both ME/CFS and HIV/AIDS. She says that, with the current state of treatment, she herself would rather have HIV than ME/CFS. I have several chronic conditions that cause extreme fatigue, and each time a new one has surfaced my greatest fear is that it's ME/CFS. I'm always incredibly grateful that it's not. I'll gladly keep my fibromyalgia and 20-some other diagnoses instead, thank you!
Talking about health problems is difficult already, this is an especially tough one to explain, and when your brain fog kicks up it can be downright impossible to get the right words out. Here are some articles to help you explain this illness to people in your life:
- Fast Facts About ME/CFS
- A Simple Explanation of ME/CFS
- When Someone You Know Has ME/CFS
- READERS RESPOND: Explaining ME/CFS
In the upper right-hand corner of these articles, between the banner ad and the gray line, is a "share" icon that you can use to send it to someone. I hope these help you get the message out there, and that the message helps you get through your life a little easier.
What challenges have you had explaining your illness to people? What has helped? Leave your comments below!
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The trick is almost always to find something they can relate to. With fibro, I usually tell people it’s like how you feel with the flu – the honest-to-god flu, not the cold you tell your boss is the flu because you want a sick day but the high fever, shaking, chills, hurt-so-much-you-wanna-die flu.
I find that after several years of dealing with this, I’ve lost friends because they simply don’t want to hear about it anymore. They ask me how I am — and rather than say “fine” — I will tell them. My family I will go into some detail because I need someone to talk to — and even they avoid me because they don’t want to hear it anymore. It’s a very isolating illness because 1) people don’t understand it; 2) people can’t see it; 3) people think that it is just you being “tired.” Lack of information.
I’m finding that I’m growing more and more content with life the way it is — such as that may be at times. I’m thankful I have a great husband and kids who fully support me — they may not understand all the time, but heck, I don’t half the time either! Thanks for the article.
I have fibro with fatigue and what’s bugging me these days is that I feel scapegoated by my son because I take opioids (very small dose) and therefore am unfit to babysit (”you’re unreliable”) or potentially drive the grandchild anywhere.
I know I need to mount a defense in the moment or stop including him in my life (difficult). Also, I feel that I am not someone girlfriends look up to, i.e. my energy and career (hah!) doesn’t inspire them–they tend to drop me.
Ah–so what. I am striving, persevering in my own endeavors but I need to be less “understanding” and unconditionally loving toward my son and give him some reality vis a vis medicine for pain or medicine for any other ailment.
Thanks for the vent….
People will never understand as long as the disease has the belittling name of “chronic fatigue syndrome,” which translates as “tired all the time” in most people’s minds.
Just try saying that you have “chronic neuroendocrineimmunlogic disorder” and observe the very different response that this name creates. I have never had anyone say to me, “I think I have a touch of that chronic neuroendocrineimmunologic syndrome myself!” But I have had most draw a parallel between their tiredness and my chronic illness.
The medical community does not care that the misery of our situation is increased by their insistence on a name that has long ago become acknowledged as ridiculous. They should care though. The situation has an impact on all suffers of CNEIDS, increasing the stress of having this disease.
Don’t want to sound hopeless but I’ve been suffering for almost 18 years and words cannot describe to anyone how awful this is. Don’t waste your energy!!
I have had FM and CFS for nearly 35 years. They didn’t know what is was back then. My mother said I was just lazy. Even now my family doesn’t completely understand, but my husband and kids are great! And now that my sister has fibromyalgia, although a mild case, she has a much better understanding. Too bad that’s what it took.
I agree with Mary. Don’t waste your energy trying to explain. People ask the proverbial “how are you?” and I say ok or if they are of the few who really know what’s going on, I’d say something like “still breathing.” Unless someone has these dreaded illnesses, they’ll never really understand how we feel on a daily basis.
Thank goodness that we have these support systems on line. They’ve been a great help.
Peace to all…
My doctor does not get it…first, she changed meda from Vicodin with Tramadol to Oxycontin, and Vicodin. Two months later she cut the dosage of Oxycontin in half. I had been doing okay with the original dosages but after my body adjusted to the higher dosages, I found it impossible to control the pain. I don’t know if she is ingnorant about how opoids work or if she’s sadistic.
She also insists that I maintain a schedule for exercise. Hah! My mind can adhere to a schedule but my body says, “not today.” She believes that I can work thhrough the pain on those days.
I hate finding another doctor but I’m almost forced to do so. I don’t want to wear the label of “Dr. Shopping.” Thanks for allowing me to vent.
I HAVE ABSOLUTLY NO ONE WHO REALLY UNDERSTANDS HOW I FEEL. I TRY TO TELL THOSE AROUND ME BUT THEY CAN’T EEN BEGIN TO KNOW, LET ALONE UNDERSTAND. I GET THE CHARACTER PHRASE I KNOW I GET TIRED TOO. BUT IF YOU TAKE A NAP YOU’L FEEL BETTER. WELL I DON’T KNOW ANYONE WHO GOT BETTER BY TAKING A NAP, BUT IF ANY OF YOU KNOW WHAT KIND OF NAP THAT IS PLEASE LET ME KNOW. I AM PRETTY MUCH ALONE IN THIS AND IF NOT FOR THESE FORUMS ALONE I WOULD BE. GOD BLESS YOU ALL AND I WILL THINK OF MY FELLOW BLOGGERS DAILY.
This website has been extremely helpful to me! I was recently diagnosed with CFS, after 7 months of feeling horrible, having MANY tests, going to numerous Specialists, etc. Luckily, my Primary Care Dr. never gave up, and believed everything that I told her & believed all of the symptoms that I described to her. But, I still have never felt so exhausted, so frustrated, and so alone in all my life. Thanks to the love & support of family & friends….and this website & the people on it; I feel like I am going to be able to face this disease. I can’t thank you enough!