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.
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