Interstitial Cystitis and Stress: A Spouse Perspective
I sometimes fantasize how easy my life would be if my wife, Gaye, did not have Interstitial Cystitis (IC). It often seems that every aspect of our lives such as travel, meals, finances and daily errands are more difficult because of IC. It is amazing that my wife and I have been able to cope as well as we have with these added pressures.
Life can be very stressful even when illness is not involved. Handling the pressures of our fast paced world is not an easy task. For most people, there never seems to be enough time in a day to accomplish what needs to be done. Dealing with stress is an individualistic thing because no two people experience stress in exactly the same way. A good example of the individual nature of stress is how people perceive a roller coaster ride. Some people get on a roller coaster, sit in front, clap and cannot wait to get on the ride again. Others are like me. I cringe, have white knuckles, and cannot wait for the ride to end.
The variables of stress and IC also affect Gaye and I differently. I often feel the extra burden and responsibility after a hard days work, at my full-time job, of having to run multiple errands and perform household chores when Gaye is not feeling well. I also find it very stressful to not be able to predict if leisure and travel plans will need to be cancelled because of an IC flare-up. Gaye, of course, is much worse off than I am, because she experiences one of the worst stressors of all - extreme pain. When I start to feel sorry for myself, I try to imagine the agony I felt when I had a horrible tooth ache a few years ago. It is difficult for me to perceive what it would be like to experience that intense pain on a daily basis.
Although this column will focus on IC stress from the perspective of a spouse, or partner, it is important to understand that if one person in a relationship has stress, the other person will also very likely become stressed out. Each partner in a relationship needs to acknowledge, understand, and help the other with his or her problems. If problems are not dealt with mutually, the stress level will probably continue to increase for both the caregiver and the IC patient.
A stressor is anything that threatens, worries, scares or even thrills a person. Stress can also be defined as what a person experiences when he or she believes that they cannot cope with a threatening situation. It is very easy for a spouse, or partner to believe that there is nothing that can be done to make a loved one with a chronic illness feel better.
IC is very unpredictable and it has no mercy on the individual it affects. It comes and goes without any warning. Often, the IC patient's moods and behaviors will seem irrational to others because he or she is in so much pain. It is challenging to predict when, or if the IC patient will begin to feel better. Interstitial Cystitis is also stressful because it affects significant others differently as life's circumstances change. The birth of a baby, the IC patient's inability to continue working, or the cancellation of an anticipated vacation, can spark new stress.
Spouses and partners of the IC patient face chronic stress because the disease has no cure and typically does not completely go away. Chronic stress is very difficult because it can lead to exhaustion. Physical and mental health problems such as depression, often develop under conditions of chronic stress.
I usually describe living with the IC patient as a marathon, not a sprint. It is crucial that family members learn to make adjustments and develop new coping skills in order to meet the new challenges that will inevitably occur as time passes. Learning to deal with stress is one of the most important coping skills that can make life easier, for both the patient and partner.
Coping with stress
Stress is unavoidable. There are, however, some stressors that a person can control. The following strategies help a spouse or partner to make living with IC a little easier:
1. Learn about Interstitial Cystitis - Understanding IC is probably the most important thing that a spouse or partner can do to eliminate stress. Fear of the unknown is one of the scariest things that a person can face. It is very important for the entire family to learn about this complicated disease so that expectations are realistic. I will never forget a visit that Gaye and I made to the urologist shortly after she was diagnosed with IC. It was wonderful to hear that IC does not necessarily get worse as the patient gets older. I also learned, however, that there would not be any miracle cures and that we would probably have to deal with this disease for a long time. That doctor's visit gave me some comfort as well as a dose of reality that I needed to hear.
2. Try to cope with the "little things"- When we think of stress, we often think of the major stressors such as death, divorce, financial ruin, etc. Certainly IC is a major stressor as well. However, it is the moderate stressors and minor irritations that ultimately lead to a continuing sense of stress. Some examples of everyday hassles are traffic, losing our wallets, denting the car and long lines. These small things by themselves need to be handled in a healthy manor and put into perspective. If two or three of these hassles bother a person to the point where they become irritated within the same day, the everyday burden of IC can become difficult to cope with.
3. Examine your thoughts - I sometimes think of myself as a "caregiver" in my relationship with Gaye. When I take on too many responsibilities and begin to feel like a "caregiver," I often feel overwhelmed and start to focus on all of the things that IC does to wreck my life. Over time, I have come to realize that my thoughts strongly affect my stress level. I am not just a "caregiver" and my wife is not just an "IC patient." I can honestly say that now I lose my temper much less frequently with Gaye than I did in the past, because I now try to evaluate whether my thoughts about her are irrational. When I find myself getting angry with Gaye, I attempt to leave the situation for a few minutes so I can assess whether I am really angry at her, or whether I am angry at something else in my life. I also need to constantly figure out whether I am trying to take on too much responsibility in our relationship, and if Gaye's reactions are partly due to the fact that she is feeling so badly.
4. Learn how to support your partner - We receive so many e-mails from patients who have little or no support. My wife says that she is grateful that I have a background in special education. When she was diagnosed with IC, I took the bull by the horns and began to be very proactive for my sake. I knew that people that required special education had to rearrange their lives. If they did not, they would suffer more in our world. I also knew, from working with families of special education children, that paying attention to my wife's needs would help me in the long run. When one ignores his or her partner's needs, he or she will pay twice fold. I am not meaning to be cynical. I am being honest.
When the IC patient's needs and feelings are dismissed, he or she can feel abandoned which may cause the IC patient to over-focus on IC symptoms. The patient may become consumed and obsessed with pain, needs and emotions. This situation sometimes makes a partner want to emotionally distance him or herself even further from the IC patient. As the patient's condition grows worse stress levels sky rocket for both partners.
5. Your partner knows when you are only being dutiful - Believe me, the IC patient will know when a spouse or partner is being dutiful instead of caring. We have to address this difference at times. When the IC patient's partner is feeling extra tired or "burnt out," he or she needs to communicate these feelings. It is more stressful to hide feelings than to talk about them.
6. Learn how to use caring distraction techniques to help your partner - During a recent pain study, husbands and wives were divided into two groups. The wives in both groups were hooked up to a machine that produced mild shocks. The husbands of one group were asked to focus on their wives' pain responses to the shocks, while the other husbands were asked to distract their wives from the shocks. The wives with the focusing husbands showed higher levels of pain than the wives who were distracted while they were receiving shocks.
Distraction techniques simply mean employing something that's of interest, or pleasure to your partner. During bad flare-ups, buy your partner a book she or he has wanted to read. Leisure reading is a great way to escape IC symptoms. So is a good movie. Rent a video or DVD. Get a favorite take-out meal. Eating (IC friendly foods) often helps to calm bladder symptoms, as well as keep them at bay. A good foot rub is another wonderful way to make a partner in pain relax, and feel better. It really doesn't take that much to distract your partner, as long as you're sincere.
7. Use exercise as stress management - The partner of the IC patient may wonder how one more variable in a busy schedule can be managed. After all, IC partners already have many extra duties around the house, and often have to work overtime to support a family and pay the extra medical bills.
I get up very early every other day to go to the gym. Before I took this time to let off steam, I felt overwhelmed and exhausted. Not only am I healthier from the exercise, I am also eating healthy foods and looking fit.
It's easy to overlook yourself when your partner is not well, but scheduling an appointment with yourself three or four days a week to go to the gym, take a run or a walk, get on your exercise bicycle, or whatever appeals to you, will serve as stress management.
Exercise of the Month
To begin this breathing exercise, lie on your back. Place your hands on your lower ribs and rest your arms at your sides. Now gently breathe in through your nose and imagine your lower rib cage (front, back and sides) expand and become wider, so that you are aware of the three dimensional movement of your chest. On your exhale, imagine your ribs resting down and coming closer together. As you continue this exercise, gradually move your hands up your chest so that you feel the movement under your arms and across your shoulders. Make sure that your inhale is natural, gentle and not forced.. and that you use a slow exhale.
After your have breathed into your upper ribs, slide your head back as far as you COMFORTABLY can. Now take a good cleansing breath and let your chin slide down on your exhale. You will probably notice that your chin is less tucked, which will help you to breathe more fully. Adjust your head position for comfort.
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