Impact of Marriage Roles Due to Disabilities Brought on by Rheumatoid Disease

Iris Zink, MS, RN, NP-BC
RNS Immediate Past President
Lansing Rheumatology, Lansing, Michigan

Chronic disease doesn’t just happen to the person who is diagnosed. The nature of a relationship is a life partnership between two individuals who share intimacy and are supportive of one another. That life partnership can take a big left turn when one partner receives a diagnosis of a chronic, possibly debilitating, and certainly life altering disease. Being diagnosed with a chronic disease changes everything.

We all know that men and women think differently. Even in same-sex relationships, both partners come into the relationship with different histories, values and preconceptions of what an ideal relationship looks like. Ideally, in a relationship each partner brings balance to one another’s strengths and weakness in order to create a stable bonded relationship. Relationships require nurturing, communication and intimacy in order to be successful. Adding a chronic disease is a life changer that no one anticipates or prepares for. We all have our ideas about how life will go with career successes, family, retirements and even a Winnebago.

Modern women whose role often consists of being the family superhero by balancing childrearing, work and household responsibilities; as well as men whose traditional role too includes hero, fixer and breadwinner can feel like their roles, realities and life plans have been devastated when the chronic disease is diagnosed. A previously healthy individual often feels betrayed by his or her own body and can actually experience phases of grief and loss.

Proceeding through Dr. Elizabeth Kubler-Ross’ model of grief stages happens differently for each person. Bargaining, denial, depression, acceptance and anger may occur at any time after the diagnosis, and can occur in random order. Newly diagnosed individuals, who are in the bargaining phase of grief over the changes in their health, may reach to homeopathic treatments, dramatic lifestyle changes and perhaps even seek new religion in hopes that their chronic illness will go away. In order to adhere to proven treatment options, the person must be ready to accept, if not embrace their diagnosis. In any relationship, chronic disease does not happen to just one individual.

Everyone handles stress differently. Men who often have more issues with communication can turn even more introspectively and not want to discuss their feelings with their partner. Women who are more natural communicators, need to talk about their stress, process their feelings out loud and expect support during times of health and illness. Mark Gungor the author of Laugh Your Way to a Better Marriage, observes that “one of the most intimacy enhancing activities you can do in a marriage is talk”. Communication is the key to success to all things intimate including intimacy. Mutual understanding and open communication can resolve misunderstanding and bridge conflict.

One of my patients with recently told me a story that illustrates how people process the stress of chronic illness differently. A thirty-year-old female, Amy during a recent office visit shared that her stress had worsened as her father’s prostate cancer had spread; he had broken his hip and there was little medically that could be done for him. Amy, along with her husband and two young children, moved back into her parent’s home in order to help her parents and be there with him during his last months of life. The problem is that this young woman lives with a diagnosis of lupus. Amy’s mother has an immunodeficiency disease as well which is fairly well controlled with IVIG treatments. Both Amy and her mother have lived with years of chronic disease. Amy told me that she was having an increase in kidney pain and was worried that she might have a kidney stone or the ever-elusive lupus was attacking her kidneys. She called her primary care doctor who suggested she go to the emergency room.

So, Amy called her mother (who has always been Amy’s support person to pick the kids up from school, while she got checked into the hospital. Mom asked Amy where her husband was and, Amy replied “golfing”. Amy’s mother exhausted from caring for her terminally ill husband was shaken by the request and Amy’s response. She did pick up the children, and Amy kept her mother updated on what was happening at the hospital; Amy was released from the hospital after testing failed to reveal a kidney issue.

Some would read that story and be angry at Amy’s husband for not being present with her at the hospital. Some might think that he must not care much about Amy. If you ask Amy however, she says her marriage is good. She and her husband have been together long before her diagnosis of lupus. So why did her husband not come to the hospital? The answer is Normalcy. Men have a tendency to want to fix things. We have all experienced this. Women get frustrated or hurt and cry and men quickly offer solutions to fix our issues and problems. Men are natural problem solvers. But, chronic disease is not something that can be “fixed”. Amy’s husband has learned over the years that her disease is chronic and he can’t fix it. He feels helpless over the chronic nature of her illness so he denies that it exists. He does not love her any less because of her illness, he just sticks to keep his life as normal as possible so he will not have to deal with the idea that his wife has chronic pain, and a life- threatening chronic illness. Over time Amy has realized this. Her support system has been her mother. Her mother was there when she was sick as a teenager and when she was diagnosed with lupus so Amy feels her mother knows her story the best.

This is why women with chronic illness may be better-supported living near their family, and not move to where their husband is from or where their job takes them. Women tend to have more difficulty re-establishing a support network in a new location especially with the stress of chronic illness and early in a relationship. Expecting one’s spouse to be the sole support even in healthy marriages is not healthy. We need to have a support system of friends and family to help in all stages of our life, and family in health and especially in times of illness.

Men are more reliant on their spouse for support and to remain healthy. In the book Case for Marriage authors Maggie Gallagher and Linda Waite prove that married men are healthier. Married men live longer than their single counterparts. Gallagher and Waite show that being single for a man is as risky as smoking two and a half packs of cigarettes a day. A man’s support system typically includes his wife and that is usually it. As men communicate less their friend group is usually more of a group of individuals with common interests than it is a social network of support members who drop everything to take care of one another’s children. Men and some women bring an invaluable tool to relationships. We are attracted to those with a sense of humor. This trait is instrumental in times of stress. The use of humor can break tension and reset the tone of a stressful situation. In situations that can’t be fixed, men especially can lighten the load by infusing humor. Laughter heals and helps us release endorphins that help us bond and relax.

Relationships are instrumental in managing chronic illness. Yet chronic illness can put the most strain on even successful relationships. Chronic illness changes everything. Often the stress of the caregiver becoming more dependent on his or her spouse can cause role stress. For both men and women becoming dependent on their spouse can harm their self-esteem. Often one partner in an effort to ease the burden of chronic illness and fatigue will pull away sexually so as not to further burden their partner. This only leaves the partner with the chronic illness feeling less desirable. The chronically ill partner may even make attempts to push away their partner in an effort to relieve them from the burden of their care.

Intimacy in the form of communication, and sexually are the keys to resolution of the stressors of illness. If the communication difficulties cannot be resolved then counseling should be sought out while there is still love in the relationship and well before anger and disrespect leads to no interest in saving the relationship.

 

Marriage & Chronic Illness

Communication is essential

Sense of humor always helps

Support group outside of the relationship