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IC Over Time - Andrew's Perspective

Gaye and I celebrated our 14th wedding anniversary last spring. It is hard for me to believe that the time has passed so quickly. Our anniversary has motivated me to reflect on our marriage and the ways that each of us has changed over the years. Gaye's IC is certainly one of the most significant factors which has affected our lives. Over the years, this disease has forced each of us to change our expectations about a variety of important things such as career, travel, housing, food and sex. I would like to share some thoughts in this column about how we have coped with this disease over this long period of time.

I used the analogy of "running a marathon" in our book, Patient to Patient: Managing Interstitial Cystitis & Overlapping Conditions. IC is a chronic illness that the patient and family members will have to deal with over a period of many years. Having a chronic illness is different than having an acute illness because of the long-term adjustments that have to be made.

Having the flu is a good example of an acute illness. When a person has the flu, family members must make changes in their lives such as calling a doctor, staying home from work or school, and getting prescriptions filled. In a few days or so, the patient is well and everyone returns to their normal routine.

It has been very difficult for me to accept the likelihood that Gaye will have IC for the rest of her life. There are times when I fantasize about a future in which health concerns are not so important to both of us. In reality, however, I know deep down that we are both in this thing for the long-haul and that we will have to adapt and learn new ways to make our lives happy and fulfilled.

Fifteen years ago, when I first began dating Gaye, I did not know anything about IC. In fact, when I met Gaye she appeared to me as being an exceptionally healthy person because she taught an exercise class that I attended! Becoming involved with a person with a chronic illness was the last thing on my mind during the time that I fell in love with Gaye.

As I got to know Gaye a little better I began to notice that she sometimes complained of pain and that she needed to use the bathroom more often than most people. This did not bother me very much at the time because Gaye would not let these symptoms outwardly affect her. During the eighteen months that we dated we had a wonderful time traveling, eating in restaurants, and staying out late at night at New Orleans' favorite night spots. I now know that Gaye was in more pain than she was telling me and that she was trying to keep up with me to make me happy.

I also remember that Gaye described herself as the "Princess and the Pea" when I first met her because she was so sensitive to everything. I thought this description was cute when I first heard it. Little did I know that our lives would soon change because of interstitial cystitis.

Unfortunately, Gaye's IC symptoms became worse. I figured that medicine would solve the problem and that she would soon be pain-free. Gaye saw several gynecologists who were unable to correctly diagnose or treat her pain and frequency. Although I did not tell Gaye, I could not understand why she was so frustrated with these competent professionals. After all, they came highly recommended from Gaye's friends. Finally, a urologist told Gaye that she might have IC and that she should read the book You Don't Have To Live With Cystitis by Dr. Gillespie. This book changed our lives because Gaye first learned about IC, and because she also began following the diet for IC.

I have to admit that my first reaction to the diet was selfish. Food is very important to me and I did not want to change the way that I would have to eat because of Gaye. I remember feeling angry when we could no longer eat in some of our favorite restaurants. It also took some time before I actually believed that the diet was necessary.

Gaye was finally diagnosed with a cystoscopy about two months before we were married. This strange disease was now becoming more real to me but I still thought at this time that things would get better somehow if Gaye kept receiving medical treatment. I was also encouraged that the IC diet and cystoscopy procedure improved Gaye's IC symptoms, for a while.

We had a wonderful three week honeymoon in England (Where Gaye has family) and France and athough it was difficult, Gaye managed to follow the IC diet. I was especially proud of my ability to order food in Paris for Gaye that was IC friendly. It was on our honeymoon, however, that I first experienced disappointment in regards to curtailing activities that I had looked forward to because Gaye was in so much pain. I found it difficult to accept and remember feeling sorry for myself on more than one occasion. It is now hard for me to believe that Gaye was able to even take that three week trip because we now have to limit our travel to one week when we take a vacation. I think that our current lifestyle makes me appreciate our honeymoon even more as I reflect back to that happy time.

I have emphasized in previous columns how important it is for a spouse to accompany her/his partner to the doctor. I remember feeling like I had more control over my life as I learned more about IC. It is still vivid in my memory when a doctor in Boston, a few years after we were married, told Gaye and I that the disease would not necessarily get worse over time. That was a wonderful moment for us. I also get satisfaction when I can help Gaye during an appointment by confirming her symptoms to skeptical doctors. It is interesting how our perceptions of the doctor are different. There have been several instances in which I thought the doctor was great and Gaye had the opposite opinion. I think that I now finally understand the frustration and anger that has built up in Gaye through the years in regards to insensitive doctors.

There have been two periods during our marriage when Gaye and I did not communicate effectively with one another. I also believe that these periods correlated with my anger and frustration in regards to Gaye's medical condition. We saw a psychologist during these times and it was very helpful. Getting feedback from an objective professional enabled us to find ways to de-stress our lives and deal with our feelings more constructively.

As time has passed, I find myself getting disappointed less when Gaye has to cancel events, dinner reservations, and even trips. Through trial and error, I have learned that I have a much better time when Gaye is pain-free than when she accompanies me in a social situation and is in pain. Experience has taught me that most things can be successfully postponed until a time when Gaye is feeling better.

Gaye also suffers from chemical sensitivity and fibromyalgia. I think that I am actually able to deal with Gaye's IC symptoms better than these overlapping conditions. This emotional response might be caused by the fact that I understand IC better and because I can help Gaye by planning ahead, finding bathrooms and aiding her with the IC diet when I shop and cook. There seems to be very little that I can do for her when she is sitting on an airplane next to a person with lots of perfume!

In summary, what seems to be most apparent to me, as I reflect back through time, is that I am probably most supportive to Gaye when I am able to take some proactive steps which make me feel a degree of control over her IC symptoms. It also helps when both of us effectively communicate our needs and feelings. It is never too late to keep improving and I hope that, as the years pass, I will learn additional ways to cope better with IC, as well as her overlapping conditions.

About The Authors:
Gaye 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.

Andrew has 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.

They welcome your comments and feedback on their articles at: The Sandlers

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