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[IP] the yin and the yang of diabetes

Dear all,
I apologize in advance to those of you who hate long posts and invite
you to skip over this if it's just too long.
The recent discussion about whether diabetes is a disability or not has
brought up many issues and thoughts, and I wanted to share something I
wrote several years ago about what I see as the two-sided nature of
living with diabetes.  I often describe diabetes as a "mental illness",
because so much of what we do each day happens in our heads (do I have
all my supplies?  when will the next meal be?  do I need to plan for
unusual events? etc.).  I think that's one reason people see diabetes as
not all that serious, because they don't see the constant vigilance that
goes into staying healthy.

  In the past 10 years with Type I diabetes there are 2 phrases which I
have come to detest.  Upon learning that I am diabetic, many people have
one of the two following responses:  (1) “Oh, that’s not too serious,
right?” or just (2) “Ohhhhh. . .”  The second response is accompanied by
a crestfallen expression and knowing nod of the head.  Many people then
choose to relate a story about the uncle who had both of his feet
amputated or the neighbor with “brittle” diabetes and the miserable
details of her life.  (One woman, after the initial “Oh. . .” actually
said, “I saw “Steel Magnolias”, as if this meant she understood my
personal fate.)
     I know why I hate these comments: Both are assumptions.  One
assumes that, because it is treatable, diabetes is just not that big a
deal.  The other assumes just the opposite--that having a chronic
illness for the rest of one’s life is an unbearable burden.  Most people
are well-meaning.  They feel uncomfortable finding out that this healthy
looking, young, assertive woman has a chronic illness, and they feel the
need to say something, anything, to fill up the ensuing silence.  I try
to be patient, to educate, to explain a little about life with diabetes
.  I always hope that the next diabetic they meet is greeted with a
little more understanding.
     Not everyone makes these assumptions; some ask questions.  Those
people make my day.  When I am asked what it’s like to live with
diabetes, I can share that it is a complex existence.  There are many
days when diabetes seems like no big deal, when I am able to live my
life and feel fairly “normal”.  I am extremely thankful for the
technology that allows me to be independent and healthy, and most of my
days are good ones.  But there are also days when diabetes does seem
like a huge burden, when I’ve had to treat for low blood sugar 3 times,
when I feel like my diet is unfairly restricted, when I’m sick and tired
of the daily routine required to keep myself healthy, and when I feel
like I need that “vacation” which diabetes never affords you.  It is a
disease both extremely serious and extremely manageable.  This dichotomy
is, to me, one of the most difficult facets of living with the disease.
I have a potentially fatal disease, but I also have a great degree of
power to control its effects and to live a full life.
     Today was one of those bad days, though.  I had an all-day visit at
the diabetes clinic.  Part of the day was spent with the
ophthalmologist, who told me that I have a microaneurysm in my right
eye.  This is the first time that I have had any sort of complication
from diabetes.  The doctor went on to explain that it was nothing to be
worried about, that it was normal after 10 years duration of diabetes,
that my eyes looked great, blah, blah, blah.
 I am well educated on the effects of this disease.  What I heard,
though, and what I felt, is that my body is no longer unscathed.  And
that all the daily hard work I put in trying to keep diabetes and its
complications at bay are still not a guarantee that I will remain 100%
healthy.  I know the facts, and I know that I am essentially very
healthy.  I know that I will continue to maintain tight control, because
I do believe that it works.  But today’s news was still hard for me to
swallow.  Despite everything I know, it felt a bit like failure.
     I am fortunately blessed with a large support network of diabetic
friends, which keeps me going through the worst of times.  When the
going gets rough, I don’t want to explain to someone how it feels to
have diabetes.  With these friends, I don’t have to.  In the sometimes
lonely existence of living with the disease, it helps just to know that
others are out there living with it as well.
     My endocrinologist is also diabetic, which means a great deal to
me.  Today during my exam, he asked me when I had been diagnosed with
diabetes.  March of 1986.  “Oh”, he said, “then you’ve just had your 10
year anniversary!”  Ten years with diabetes.  Ten years of blood tests
and insulin and doctors visits.  Ten years with diabetes and nothing but
a microaneurysm in the right eye.  That’s pretty good.  No explaining.
No comments.  He quietly acknowledged this milestone.  And I knew he
understood what that really meant.

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