"Nobody Understands!"
Deborah A. Barrett
http://www.paintracking.com/fms07.html
The other day, during a casual conversation, a friend told how she had
explained my condition (fibromyalgia) to someone else:
You know, when you work yourself really hard, so that you feel totally
exhausted, and you ache from top to bottom so badly that you cannot
even get up? Well that's how Debbie feels. Only it does not go away.
I was floored. I felt tears flooding my eyes. But why? I wondered.
Well, because I was understood. My friend showed me that she knew what
I was experiencing, how I go about my day. If she were an
anthropologist, she should feel successful because she managed a deep
understanding of the "native's experience."
Later, I thought about my friend's simple explanation of fibromyalgia.
Why was it so meaningful to me that someone understood how I feel? At
the same time, however, I felt a little strange about it. As if my
friend had peered into the otherwise personal and private relation****p
between me and my pain. I pondered my mixed emotional reaction.
I began to ask people with similar "invisible" conditions about their
desire to be understood. The answers were mainly practical: If we were
understood, they explained, we would not have such a difficult time
being excused from certain activities. Friends would understand why we
were saying "no," and not push us. They would accommodate us, or give
us a break when we need it. The same goes for family, and even
coworkers when possible. In addition, being understood is im****tant
because it can restore self esteem when we are not able to finish (or
even start) the projects we take on. Being "ill" is preferable to being
thought of as "lazy," "hypochondriacal," or a "whiner." Finally, being
understood, particularly by someone who shares our experience, creates
a feeling of camaraderie. You do not have to explain in any detail to
produce an accurate picture or evoke an appropriate response. To be
understood is to be validated.
What It Means to Be "Understood"
Many of us often think with dismay that "nobody knows what we are going
through." This is probably correct. The casual observer is unlikely to
perceive the depth of our pain or fatigue through our behavior or
appearance. And our friends, try as they may, often feel confused by
our seemingly strange array of complaints. Our presentation
communicates the double message of "invisible illness" -- that we can
look perfectly fine, but feel absolutely crummy.
A few friends of mine with invisible illnesses, however, prefer the
secrecy. They would rather appear like everyone else and lick their
wounds later, in private. They have weighed the cost of added physical
discomfort against the biases they imagine people may have against
them, their abilities, their attractiveness, and even their value as a
person, and decided to "bite the bullet." For them, understanding
appears threatening, unless reserved for their most intimate circle.
As such, understanding represents a two-edged sword. Let's think about
it. If someone really knew what you were experiencing, say, right now,
how might that person feel or react? How do you feel when you know
someone is suffering? Knowing the extent of our difficulties may
frighten others, depending on their own life experiences and how close
they are to us. Those closest to us, and particularly the more
nurturing, may become overprotective. They may wait on us hand and
foot, as though we are unable to do anything for ourselves.
At the same time, our social invitations may dwindle as "understanding"
friends protect us from overtaxing activities. And although there are
laws against discrimination, it is not difficult to imagine coworkers
and bosses changing their opinion about the type or amount of work
suitable for people like us (even if we had been successfully doing
it!). Such "understanding" could affect our ability to find and keep
manageable employment.
It therefore seems to me that understanding, like many things, is
something that we want when it is convenient for us, but that we would
like to withhold when it works against us. Rather than providing full
information with a vivid stamp on our forehead (or something less
abstract such as a wheelchair), we may prefer to disclose information
about our
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