|
|
Not knowing, that's what frustrates our community the most. Although the
responses to this Sounding Board were varied; underneath there was a common
theme. What really frustrates people is not knowing, not just not knowing
what will happen with their symptoms and disease - although that was a common
response - but the fact that other people don't know what they are going
through. From doctors, to judges, to the media, to friends and family, the
unfortunate fact is that most people are ignorant of the basic facts surrounding
CM/SM, not to mention being able to really empathize with what someone is going
through. Compounding the problem is that many times there is
no outward sign that someone has this disease, making it especially difficult
for an outsider to understand what is happening on the inside.
This lack of awareness can lead to many frustrating
encounters for a CM/SM person. Doctors that brush off symptoms or seem to
be out of touch with the latest research, disability judges that make decisions
based on outward appearance, bosses and co-workers who think you're lazy, and
friends and family who don't understand why you can't do certain things are all
sources of frustration.
I, like everyone else in this position, have had
to deal with this problem. What I've come to realize, and accept, is that
no one can really, truly understand what it is like for someone struggling with
these diseases. While some people are more sympathetic and empathic than
others, every person's experience is unique. Everyone perceives their pain
and symptoms differently, everyone has different dreams that will not be
realized, and everyone's work and family situation is different.
This is not to say that we should do nothing about this
problem, just the opposite. It is critically important for everyone
affected to patiently inform others and raise awareness of these diseases to
benefit the community. Work with doctors regarding the latest thinking on
important topics, make judges realize the limitations you face in a competitive
workplace, and be strong in explaining to friends and family why you can't do
things. The flip-side of this is accepting the reality that some people,
no matter what we try to do, will show no understanding or sympathy. While
this can be incredibly frustrating, if we pick our battles and focus on raising
awareness among people who are open to it, we will make life easier for people
in the future.
Thank you to those
who participated in last month's topic, hopefully we'll get as good of a
response this month.
- Rick Labuda
This Month's Topic:
Has anything positive come from your experience with these conditions?
Enter Your Comment Here And Click <Submit> (Please keep them short)
|