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Dear List

I just read Chuck Bolz's posting about epilepsie and celiac, and yesterday
there was a heart-felt post from Fran about the combination of celiac and
diabetes.  The focus of both messages was the way relatives and friends try
to tell us that the problems are not too severe.  I sent Fran's note on to
a friend who is active in patient advocacy work in diabetes, and received
this post this morning.  I am forwarding with her permission.

>From: [log in to unmask]
>Date: Tue, 18 Mar 1997 21:08:58 -0500 (EST)
>Subject: Re:  Fran
>
I have been thinking about Fran  all day. If the letter had
>been addressed to me I'd say something like .......Dear Fran, Those of us who
>know something about Celiac Sprue and about Diabetes  know that learning to
>manage either one is a tremendous job.  Learning about both of them in the
>same year is practically a full time job in itself. You must have days of
>terrible frustration, but I am proud of the effort you are making to get
>things under control. As you already know, even on your worst days, it's
>worth the trouble to feel  well and healthy so you can enjoy the things in
>life that are fun and important to you.  As for those well meaning relatives
>who tell you it's easy. Like a lot of other things in life, they will never
>know how hard it is unless they experience it themselves. You could answer by
>saying, " Actually, it's much more complicated than it appears." Or you could
>just let their remarks roll off like water on a duck's back. The magic phrase
>you used is "well-meaning". These are people who care about you. They don't
>want you to have a hard time, so they say it will be "easy", in the hope that
>somehow it will turn out to be true.  Just thank them for their concern and
>know that there are many of us in the world who know exactly what you are
>dealing with, and WE think you deserve a medal.  Joan