Intimacy and the ESRD Patient

Intimacy and the ESRD Patient

By Mark Meier, MSW, LISCW

As an individual coping with end-stage renal disease (ESRD), or as the partner of an individual living with kidney disease, it is likely you have been educated and counseled by the healthcare professionals who work in your dialysis clinic or transplant center. They may have given you information about medical issues such as dialysis adequacy, anemia management, medication regimens, renal diet, fluid restrictions, hypertension, diabetes, etc. All of these and any other medical issues presented to you by your healthcare team are vital to your well-being and deserve your fullest attention and adherence.

However, despite the attention and time spent educating you about these important issues, other essential medical and psychological aspects of kidney disease are often not discussed as openly or regularly. For example, depression, anxiety, fear and end-of-life issues, all of which have physical and psychological components, are often not discussed by healthcare professionals. Intimacy and sexuality are other issues, which are frequently not discussed in depth or overlooked completely. Intimacy and sexuality have significant physiological and emotional components which are affected by ESRD and if not properly addressed can negatively influence your quality of life.

Intimacy may mean something a bit different to all of us. For the purpose of this article, intimacy will be broken down into two aspects. The first will be discussing intimacy as it pertains to relationships and the second will be to look at intimacy from the perspective of sexuality and sexual functioning. Although these two areas are frequently interconnected and share many characteristics, they will be discussed separately.

Intimate Relationships

Webster’s New World Dictionary defines the word intimate as: 1) most private or personal, and 2) very close and familiar. These definitions, along with characteristics such as trust, honesty, openness and commitment serve as the foundations of an intimate relationship. Other essential aspects of an intimate relationship are having the time and energy to spend together as a couple engaging in mutually satisfying activities, such as going for a walk, going to dinner or spending time talking and reflecting on the activities of the day. Finding the time and energy to maintain and grow an intimate relationship can be challenging under the most normal of circumstances. As an individual or the partner of an individual diagnosed with ESRD, you have had to deal with a complex array of issues that are physically, emotionally, spiritually and financially draining. These issues will likely require you to pay even closer attention to your relationship as you navigate the challenges of living with ESRD.

What Can I Do?

Living with a chronic disease can leave you feeling powerless and without control. There are several areas in which you may not be able to control the outcome; however, you do have control of how you choose to approach the particular situation. Two important factors to consider while living with ESRD and maintaining intimate relationships are 1) how you define an intimate relationship, and 2) communication within that relationship.

What is an intimate relationship?

If we allowed the popular culture to define the characteristics of a successful intimate relationship, most of us would be confused and overwhelmed. However, and unlike some aspects of ESRD, when deciding what will make your relationship more intimate, you and your partner are in control. The two of you decide if sitting together during your dialysis treatment and reading the newspaper to one another is creating an intimate moment. The two of you are free to find closeness and create trust in your relationship as you work together to be listed for and receive a transplant. In taking control and defining for yourselves what will make your relationship intimate, you have the opportunity to turn some of the more difficult aspects of chronic disease into opportunities to draw you closer.

Communication

Most relationship experts would agree that the cornerstone to a successful intimate relationship is the ability for the two involved parties to communicate openly and honestly. In the instance of a chronic disease, such as ESRD (which unlike an acute illness does not have an ending point), you and your partner might find yourselves faced with more chances for a breakdown in communication. For example, when the partner coping with ESRD frequently feels “washed out” or is tired from the side effects of a medication that must be taken, or the partner not affected by ESRD is exhausted from performing tasks that were once the responsibility of the other — open, honest and productive communication might be a complicated proposition. It is at difficult times like this that the impact of negative communication can be profound, and thus, solutions must be found.

When regular communication is hampered by external factors, you must agree upon some rules. Agreements may have to be made that important issues are not discussed on the day of dialysis or that the individual affected with ESRD makes an effort to verbally recognize the extra efforts of the partner. You may agree that at times what one partner really needs is someone to just listen and not necessarily provide advice. Chronic illness by its very nature creates barriers to communication and intimacy. You need to have a plan in place for how to deal with your communication issues when you or your partner do not have the energy or desire to discuss the important issues before you.

Intimacy and Sexuality

Why is it that such a normal, healthy aspect of the human experience, such as sexuality, is so difficult to discuss? The literature tends to indicate that healthcare providers are reluctant to discuss sex because of their own negative attitudes toward sex, a personal discomfort with discussing sexuality or because of a lack of knowledge. In general, this might describe our society’s approach and attitude toward sexuality and healthcare workers should not bear the sole burden of responsibility. However, healthcare professionals do have a responsibility to examine their own feelings toward sexuality and educate themselves about sexual health issues and ESRD so they are able to provide you with evidence-based information.

What are the issues?

ESRD carries along with it both emotional and physical issues that can negatively affect the ability to engage in or enjoy a sexual relationship. For example, depression, which we know impacts the ESRD community at a high rate, can cause a loss of interest in sex. Anemia and some of its related symptoms of fatigue, anxiety and weakness can lead to a diminished interest in sex. Many ESRD patients take antihypertensive medications, which frequently have the side effect of diminishing erectile function. There is scarring from a vascular access or the presence of a peritoneal catheter, which can negatively influence our view of our body and therefore decrease our interest in sex. There is the general reporting from both female and male ESRD patients that they have experienced a decrease in libido. Male patients report instances of erectile dysfunction or the loss of the ability to ejaculate. Female patients report difficulties with the ability to become sexually aroused, have questions about birth control and may experience irregular menstrual cycles.

What can I do?

Despite the fact that your doctor, nurse or social worker may not openly discuss your sexual health with you, this should not stop you from raising the issue. It is possible that a change in your medication regimen may decrease your sexual difficulties, or if you are suffering from depression, an antidepressant may alleviate your mood to the point of being able to enjoy sex. There are advancements in medicine, such as the introduction of sildenafil citrate (Viagra), which can help males cope with erectile dysfunction. There are counseling outlets to help you adjust to the physical changes in your body appearance or to help you and your partner explore other avenues of expressing sexual intimacy towards one another. As with every other aspect of your disease, the more you know and are educated, the more able you will be to cope with the issue. Many resources regarding kidney disease, relationships and sexuality are available on the Internet, from your healthcare providers or by calling AAKP.

Conclusion

Maintaining an intimate relationship with your partner involves many critical elements. The two of you need to pay attention to both the emotional expressions of intimacy, as well as the physical expressions of sexuality and intimacy. Living with ESRD does not mean that you cannot achieve satisfying intimate relationships or that you should not actively pursue a relationship. Perhaps what living with ESRD does is create some challenging opportunities that, if dealt with, may enhance your relationship with your partner and provide you both with the support and love that is crucial for coping with this disease.

Mark Meier, MSW, LICSW has been the Consumer Services Coordinator at Renal Network 11 since 2001. He recently served as the study coordinator for the 2002 National Involuntary Patient Discharge Survey involving 12 ESRD Networks. Mr. Meier is active with the AAKP and was recently elected to the AAKP Board of Directors.

This article originally appeared in the March 2004 issue of aakpRENALIFE Vol. 19, No. 5.

http://www.aakp.org/aakp-library/Intimacy---ESRD/