COPING WITH IC OVER TIME – A Spouse's Perspective - by Andrew Sandler, Ph.D.
Gaye and I celebrated our 20th wedding anniversary last spring. Gaye was given her IC diagnosis after a cystoscopy about two months before we were married. It is hard for me to believe that the time has passed so quickly despite the challenges of living with a person who has this disease. I can honestly say that it is easier for me to deal with Gaye’s IC now than it was during the early portions of our marriage. I would like to share some reasons why I have been able to make this adjustment and why I am also optimistic about the futures of other partners.
There is nothing scarier than the unknown. Understanding IC is probably the most important thing that a spouse or partner can do to eliminate stress. I will never forget the first time I was told that IC does not necessarily get worse as the patient gets older. I also learned, however, that there would not be any miracle cures. When my expectations about IC became realistic, I was able to accept the day to day challenges that come with this disease without excess disappointment or false hope.
Over the years, I’ve had the opportunity to speak and listen to many IC patients and their significant others in support groups. Because of the internet and IC organizations, the in-depth knowledge level about this disease among individuals who attend these meetings is significantly higher than it was ten years ago. These motivated patients and their partners are more likely to find the doctors, treatments and coping strategies that work best work for them because they took the time to investigate the literature and attend support groups where proactive patients shared feelings and stories. I know that I have benefited from the wisdom and experiences of others.
Treatments and Doctors
For far too long, most doctors and nurses were uneducated about IC. Fortunately, this is slowly changing. Patients are also becoming more effective advocates for themselves. I always try to accompany Gaye when she sees a new doctor because I am able to confirm her symptoms to skeptical doctors. There have also been several instances in which I thought that 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.
But, I do still slip-up. Sometimes I think that doctors who practice near our home will be easier for Gaye to see. I worry about her driving long distances however, I was not right about this one. Gaye would rather go out of her way to see a supportive doctor who respects her opinions about her IC. I guess that I have learned that this is the most important thing for the IC patient. There is nothing healing about a doctor who is not supportive.
When a patient has a partner who recognizes the pain and challenges of IC, the patient will feel more confident and relaxed. This will also ease the symptoms of IC. But, when the IC patient’s needs are dismissed, he or she can feel abandoned which may cause the patient to over-focus on the IC symptoms. A partner’s negative reactions can actually make the IC symptoms get worse. Unfortunately, I sometimes do not do a good job of supporting Gaye when trips and events need to be shortened or even cancelled because of a flare-up. I also don’t do well and find it stressful when I have to run multiple errands after work because Gaye is not feeling well.
As time has passed, I have learned that I have a much better time when Gaye is pretty comfortable 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. As I have learned the variables which affect Gaye’s IC, it has become easier to gain a feeling of control by taking proactive steps such as planning ahead, finding bathrooms and aiding Gaye with the IC diet when I shop and cook. Becoming a supportive partner does not mean becoming consumed with IC.
It is easy to overlook yourself when your partner has a chronic illness. I still find time to do things that I enjoy such as going to the gym, watching sports, cooking my favorite foods, going to the theater by myself, and getting together with male friends. I am lucky because Gaye also encourages me to take advantage of the things that make me happy.
Not long ago, Gaye and I wrote a book with another IC-affected couple, Molly and Bill Glidden. The book is called “Please Understand: The Interstitial Cystitis Guide for Partners.” The four of us decided to tell it like it is and we wrote this book to help new patients, struggling partners, and patients who lack the support of their partners. “Please Understand” is gentle enough for a skeptical partner or family member. It is realistic, but positive and affirmative to all patients. Several other couples joined us to candidly share their experiences and feelings about their lives with IC. Grissom Sandler; Merrillee Kullman
Andrew Sandler Ph.D. & Gaye Sandler
Other books published for the IC and pelvic pain community by Gaye and Andrew Sandler:
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