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Living With IC - A Spouse's Perspective

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.

Introduction

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 friends.

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 settings.
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 disease.

The subjective 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.

Diagnosis

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 long haul!

Doctors

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 gets older.

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

Family members, 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.

Family Dynamics

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.