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Recently a patient came to me and asked me to write something about the
hardships of family with regard to her relationship with family members. I
thought, what a great idea!
There are so
many issues relating to this problem. The first, and most critical I think, is
that the person suffering with IC is so often misunderstood. Those who do not
suffer from this disease find it difficult to relate to it in such a way that
they can truly understand the daily misery that is endured by those who do. So
often, especially after many doctors visits and many negative examinations, the
IC patient begins to be viewed as a hypochondriac.
When the ICer
eats in a different fashion from others or cannot participate in the same
activities at the park, or on vacation, or even in a daily routine at home, she
is often misunderstood. Family members may often ostracize her and reflect upon
her poorly. They may say things that are very hurtful, meaning well but not
understanding the difficult burden of pain and discomfort she carries with her
at all times. This heaps more shame on the person already devastated by IC.
Sometimes this shame and guilt can be much too heavy for one person to bear.
An additional
strain occurs at nighttime, when normally a couple retire and have sex. This may
be something that is far too uncomfortable for the average person with IC to
even contemplate. This only serves to further the guilt that has been
accumulating over time for these people, because they feel that they cannot be
there fully for their spouses.
Family members
want the best for each other, so, naturally, the thought is for the sufferer to
take a medication to fix the problem and, if it does not work, to try another
one. If someone is sick, the natural thought is that surely health can be
restored. Lots of people live with irritable bowel syndrome and they function
fairly normally. The presumption then is that it should be the same with an
"irritable" bladder. Generally people do not understand how painful or
uncomfortable this syndrome is. This is a disease that, unless you have had it,
cannot really be understood.
Even morphine
does not take the pain away from these poor people. Morphine! So imagine how
uncomfortable the condition must be. Think of a time that you were stuck in
traffic in the middle of the day, your bladder was full to capacity, and you
could not stop anywhere to alleviate yourself. Imagine having to withstand that
feeling for one hour past the point that it was already at its peak when sharp,
prickly sensations started to set in. Do this and only then you MAY be able to
get a tiny glimpse of what some of these people go through every moment of every
day of their lives.
Along with this
pain and discomfort, there comes the hardship of trying to lead a normal life
and do the daily tasks that one has to do to survive. When a family member
interjects a comment lacking in compassion, especially one which, may infer that
this disease is "in your head", life becomes just too much. When your sick
family member has sought out help from non-conventional medicine, please try to
empathize with their choice. Understand that it is not because they have gone
against the norm with the intent to rebel, but rather they are struggling to
survive. They are looking for hope when all else has failed. They are not
resigning themselves to the misfortune that they have been dealt in their life.
It actually has taken great strength to continue the fight when everyone insists
there is no battle to fight. This disease cultivates strength that most of us
will never know. Try to wear your empathy as close to the surface as possible at
all times, so that your good intentions can never be misunderstood. It is so
important.
Please read
this and try to close your eyes and imagine how difficult it would be if you
were in the shoes of your sick family member. Be grateful that you were not
cursed with this horrendous disease, and be there for your loved one. If you are
a spouse, I suggest that you also get help for yourself if you need a hand
dealing with the difficult issues that face you with this illness. It is
sometimes quite hard to be strong on behalf of another. However, we all have our
turn being weak in this lifetime. So, remember to give your love and support
with the same generosity and grace that you would expect to receive if you were
struggling with this awful condition.
I hope this
helps.
Dr.
Brizman
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