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Living With IC - A Spouse's
Gaye and I recently
gave lectures at the Fall Educational Forum for Interstitial Cystitis
at the MetroWest Medical Center in Natick, Massachusetts. IC patients
Molly Hanna Glidden and Joan Shure co-chaired the event with the help
of Jill Osborne, of the IC Network, and the ICA's communications coordinator,
Ann Chestnut. Also instrumental, were committee members Kara Reese,
Anna Toro-Bernard and Jeanne Madden, as well as other volunteers.
The sponsors who
made the forum possible include:
· Interstitial Cystitis Network
· Ortho-McNeil Pharmaceuticals - Elmiron
· Interstitial Cystitis Association
· AkPharma Inc. - Makers of Prelief
· Medtronic Inc. - The Interstim
· Desert Harvest - Makers of Aloe Vera
· Rimso -50 - DMSO
Dr. Emmanuel Friedman
served as the keynote speaker. I spoke about "Living with IC,"
and Gaye's topic was "Understanding the Whole Body Effects of
IC." The following has been taken from my talk.
I want to thank
AkPharma, the makers of Prelief, for sponsoring our trip here. We
are especially happy that they mention Interstitial Cystitis in their
product inserts. This happens to be the first time Gaye and I have
been back to this area since we left in 1995. It is nice to see old
My wife, Gaye,
was diagnosed with IC a few months before we were married, about thirteen
years ago. Over the years I have learned quite a bit about IC. I hope
that I have also learned how to cope with this disease, and learned
to improve as a spouse.
I will be giving
this talk from two perspectives: as the spouse of an IC patient and
as a psychologist who has worked in nursing home, hospital, and school
I will try to balance my subjective feelings about having a wife with
IC with my objective, clinical view of how families deal with this
part of this disease is difficult for me, even with all of my educational
and professional training. Let me say from the beginning that I may
know most of the correct things to do, but I do not always practice
what I preach, or know. I do not always handle my feelings in constructive
ways. I sometimes get angry and feel sorry for myself. At times I
feel sad. At times I feel resentful when special dinners and even
vacations have to be cancelled because of Gaye's IC.
IC is not just
a physiological disease. It has powerful secondary emotional side
effects. There are things that spouses and family members can do to
live better with this disease. I hope that this talk will point out
a few things that you can take home with you.
The first point,
in which families will need to cope with IC, is when the diagnosis
of IC is made. Diagnosis begins the process of acceptance. In many
cases the patient is relieved that there is a known medical condition
that causes the symptoms of IC. Diagnosis can mean that a spouse or
doctor now really believes the illness is physiological, and not in
the patient's head. Diagnosis can also lead to treatment.
For family members,
it can be more difficult to accept the diagnosis. As with any serious
debilitating disease there can be denial. It is often easier for family
members to believe that willpower can make the symptoms go away, or
at least be bearable. I sometimes wonder if it might be easier for
some people to accept a diagnosis of cancer than IC. This is probably
because at some level we are programmed to accept the fact that people
with cancer are in pain. Society has been led to believe that people
with urinary problems can control their difficulties if they have
willpower, or take a magic pill! It is often very difficult for family
members to accept the fact that IC is a chronic illness that will
not go away, and that there is no known cure. We are in this for the
It is very important
for family members, especially partners, to learn as much as possible
about the disease. The best way to do this is to accompany the IC
patient to as many doctor appointments as possible. There is nothing
scarier than the unknown. If a partner learns about the disease and
knows the doctors the IC patient sees, the disease is easier to cope
with and accept. I remember early on feeling very relieved when a
doctor told us that the disease does not always get worse as the patient
There is another
good reason for a spouse or partner to also go to the doctor. There
are still too many uneducated nurses and doctors out there. It should
not be this way, but it just is. A spouse or partner can verify what
the IC sufferer is going through. For example, when I go with Gaye
to a new doctor it seems as if she is taken more seriously.
We all need to be advocates.
It is also important
for us as partners to learn as much as possible about the medications
and the side effects that can occur. Helping Gaye, by accompanying
her to the doctor and learning about her medications, also makes me
feel better and more in control.
Dealing With Your Feelings
and especially partners, have many conflicting feelings surrounding
IC. We love the person. We want to help the person feel better physically,
and feel better about her or himself. Yet, we still feel helpless.
No matter what we try to do, the person is still in pain and still
has to go to the bathroom all of the time. When we get angry, we can
also feel guilty about getting angry.
All of these emotions
are natural, and they will occur. This does not mean that people with
these emotions are not good people. Acknowledging these emotions is
an important first step. It's also important to bring these feelings
out in the open. Covering them up or keeping them inside may mean
that they will come out in inappropriate ways, like kicking a door.
How do we as partners
see ourselves within a relationship? In my experience, dealing with
IC has caused my wife and I to take on distinct roles in our relationship:
1. CAREGIVER - My role at times
2. PATIENT - Gaye's role
3. BLADDER - Gaye's role
4. VICTIM - Gaye's role
5. RESCUER - My role. The rescuer role can lead to dependence on the
partner, and a lack of self- esteem and confidence in the patient
6. PERSECUTER - Gaye sometimes sees me in this role.
It is important
that we do not see ourselves or our partners in such rigid ways. I
know that Gaye is much more than a bladder, and that I am much more
than a caregiver. At one time, I got so caught up in taking care of
Gaye's bladder that I almost forgot about her other needs and positive
attributes. I also became so concerned and protective of her that
I lost my sense of spontaneity.
I believe that
both the IC patient and the spouse have to find ways to make themselves
more independent of each other, when possible. I have had to learn
that I can still have a good day on weekends when my wife is in a
flare-up. I can still watch my sports or go to a movie with friends.
I am lucky because Gaye encourages me to do this. I know that when
we get too intertwined with each other, too dependent on each other,
big problems can occur.
is an author and IC patient & support group leader who has
been involved in IC work for years. In 1990 she published "Stretch
Into a Better Shape" and produced a stretching and exercise
video for IC patients in 1993. She is a specialist in Aston-Patterning
movement and muscle re-education.
over ten years of clinical and health care management position.
He is currently the Administrator of Maison Hospitaliere, located
in New Orleans. Andrew holds a Ph.D. in Special Education, a
M.A. of Health Adminstration, M.A. of Clinical Psychology.
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