This was written by a prominent CFIDS specialist MD who practices in Salt Lake City, UT:
From day one of a CFS diagnosis, it’s bad
news. People around an individual with CFS
may not understand the illness, how it feels or
what to do about it.
At first a CFS patient might
receive attention, but as months go by without the kind of
physical improvement people expect, those who once
offered support may disappear. The ongoing physical limitations
are accompanied by ongoing emotional trials.
Anacute illness is definitely traumatic, but most can muster a
good fight while actively seeking a diagnosis and some type
of rescue care. It’s living with the “C” in CFS that really
gets old. (Editor’s note: see “Trauma & CFS,” page 10.)
CFS can be especially punishing compared to other
chronic illness. Because the symptoms are difficult to
measure or prove clinically, they may be met with doubt
or disapproval by those whose support is needed most.
Because CFS follows a relapsing and remitting pattern, in
addition to feeling limited most of the time, patients can’t
predict when they’ll feel even moderately better or worse.
Because of the characteristic postexertional symptoms of
CFS, an honest effort to function or simply have a little fun
is often punished mercilessly by a relapse of pain, fatigue
and brain fog.
There are innumerable personal losses in the
present and potential losses projected far into the future.
Focusing on the loss can lead to a downward spiral that
can impact life in very tangible ways.
In order to thrive, anyone living with CFS must repeatedly
rejuvenate the will to live and to find joy in living,
even while chronically ill. It can be done! No one and no
disease can take away the freedom to choose how to
respond to a difficult situation.