CFS is often thought of as 'All In Your Head', and people with CFS thought to be 'taking advantage of' their illness to get attention from their friends and family. That CFS is not a psychological disorder has now been shown by a multitude of international-level medical studies on several continents, and even the American Government has declared it to be a serious illness in need of further research.
The perception, however, that people with CFS are attention-seeking has been something that the media seems to have latched on to. I guess it makes a better news story to write about than it does to say that it's a physical illness whose causes and cures are relatively unknown.
One year, on the CFS-20s mailing list, where twenty-somethings with CFS and related illnesses can talk to each other, the topic came up and it seems that everybody had something to say on it. Actually, most of them had rather a lot to say!
Some of these quotes are fairly long, but bear with them ... they're all worth reading.
Almost everybody who wrote on this topic said that they tried to hide their illness because of embarrassment at how incapable they were, and because they were scared to be judged for being weak.
I always put on a mask when people see me. If I do not have the strength to do this then I will not see them, even my parents at times. I have often wondered if this is a bad thing to do as if they do not see us at our worse how can they possibly understand. But it is something that I can not seem to stop myself from doing. Maybe it is a dignity thing, maybe I am just trying to be 'normal'...I have no idea? :(.
-- Roger
I too wonder if I should let people see me at my worst, so they will truly understand what I go through. But I *cannot* bring myself to do this. I go to great lengths to keep it hidden. If I need to go to the bathroom, but know I will have to take those tiny shuffling steps, I stay in my room. I would rather die of bladder poisoning than let my house-mate see me in such a state.
-- Rebecca
I was always a strong person. The one who didn't complain when she's sick or sad. the one everyone else came to when they were sick or sad. That's my personality type, and I can't change that. Being sick doesn't change our personality, it just kind of limits what we can do within it. I HATE being sick. I just can't bring myself to act sick when I'm with people, I'd rather hide. On the odd occasion that I just can't help it and people see me weak or whatever, I'm actually embarrassed! I know I shouldn't be, but I can't help it! It momentarily comes as a shock to the people around me when they realize I can't do the things I used to, but how soon they forget!
-- Jannah Akehurst
This hiding of reality (the reality of CFS) from people inevitably leads to mis-communication and worsens the problem of people not understanding how severe CFS can be ...
Sometimes people get the feeling that I lead this "charmed life" where everything was always perfect for me (because this is how I presented it), and they'd RESENT ME FOR IT! ... When I first got sick people would get irritated with me, like I was just babying myself and making a huge deal out of a little flu. One friend revealed to me last summer that she and another friend used to say to each other "Corina's ALWAYS sick"--as if it were just me being self-indulgent or something! (Oh what fun--to indulge in illness!! LOL!) She hastened to add, "That was before we realized it was CFS..." It makes me so mad that people would look at it that way, but i guess--as we've said over and over on this thread!--How could they know what we're going through until we REALLY tell them????
-- Corina
I wasn't conscious at all of how much I was doing to hide how bad my health was. A few months ago when I was still living at college with my house-mate and good friend, one night I just lost it and was complaining to her bitterly about how none of my friends ever offered to cook for me or go shopping or help me out with the things I needed to do. She looked at me kind of surprised and said, "Sara, I can cook for you a lot more it that's what you need." Everyday she say me cooking and washing my dishes and didn't realize how painful that was for me (I was just trying to survive - the basics - food, clean house) Of all of my friends, she was the one that had the most knowledge about me being ill, living with me and seeing me in bed for days at a time. Yet she had no idea how bad it was. When it was really really bad, i would shut my bedroom door because I couldn't stand "exposing" myself as this completely vulnerable, incapable person(very different from my "former" self!). It sure makes me realize how clueless the rest of my friends must be, let alone my family.
-- Sara R Greenberg
Others felt that even when they tried their hardest to communicate their reality, it just wasn't possible to make healthy people understand ...
Personally, I don't believe the world is ready to see our pain, for on the few occasions I've slipped and allowed it to show through I've been accused of putting on an act.
-- Ethan H Poole
I did try for a while to let people know! I had this idealistic idea that if i could just explain to people what was going on they would understand that i didn't have the energy to maintain friendships as i had been. It didn't work though. no matter what i said, they didn't *see* me being that sick. (I remember a casual friend who would repeatedly ask me to hang out and I would say no, I'm too sick. Then she would see me with one of my very close friends and look hurt. thing was, i had to have some comfort, right? so i stuck with my friend who respected my limits.)
-- Sara R Greenberg
Thanks to all the members of CFS-20s who gave me permission to use their quotes on this page, and all the other members who fueled the discussion and help make CFS-20s such a great community.
