By Mark Meier, MSW, LICSW

Having an open discussion with those closest to you about problems you are experiencing with an intimate relationship or with sexual functioning is an intimidating task. Now, imagine you are sitting in a room with more than 125 strangers and opening up to them about your concerns with erectile dysfunction, lack of interest in sex, communication breakdowns with your partner, or difficulty reaching an orgasm during an intimate moment.

Well, this is just what those who attended the session Beyond Closed Doors: A Discussion of Sex and Intimacy did at the 2005 AAKP Convention in Las Vegas. This brave group of individuals of various stages of kidney disease, as well as partners, put aside their fears and openly shared with the challenges they have faced and the solutions they have found when coping with their disease and trying to maintain healthy, emotionally fulfilling, and sexually satisfying relationships.

What’s the Issue?

Having kidney disease affects many aspects of your everyday life. You may find yourself having to leave a job, change roles in your family, or decrease your participation in certain activities. We also know kidney disease can decrease your quality of life by causing problems with your sexual functioning. The hormonal changes you experience as your kidney function decreases can reduce your ability to obtain and sustain an erection, cause you to have vaginal dryness and discomfort, make you feel uncomfortable with the way your body looks, or decrease your overall interest in sex.

What’s Important?

As you cope with kidney disease, what can never get lost is that you are so much more than just your disease. The importance to your quality of life of emotionally satisfying relationships and healthy sexual functioning cannot be forgotten. Despite the many messages we receive from the media about sexuality being the domain of the young, healthy and “beautiful,” the audience in Las Vegas countered these myths.

One elderly dialysis patient stood up and addressed the audience about the importance of always thinking you are important regardless of your age, looks or physical limitations. This patient stressed that an integral aspect of her happiness is the fact that she thinks about herself as an attractive and sexual being. This thinking has helped her to maintain a long relationship with her spouse despite her kidney disease.

Why Won’t They Talk to Me?

Using a show of hands, members of the audience were asked to indicate if any member of their healthcare team had addressed the issue of sexuality and sexual functioning with them in light of their diagnosis. Of the roughly 125 participants, only two raised their hands and indicated they had some level of discussion regarding their sexual health with a professional in their clinic, dialysis unit or transplant center. This show of hands would seem to support much of the literature, which indicates that healthcare professionals are reluctant to discuss this integral aspect of human functioning with the patients they see. Healthcare professionals often cite embarrassment, lack of education, fear of misinterpretation of intent, or their own values getting in the way of their ability to be objective and professional when discussing sex.

To counter this lack of communication between patients and healthcare providers, the audience offered solutions. One individual noted that, when he raised the issue of erectile dysfunction with his nephrologist, it was apparent that the doctor was not comfortable discussing the concern. The patient even felt judged by the doctor for raising the issue. The patient requested a referral to another physician (urologist) and this request was granted. Another participant noted that she wrote down the questions she had about sex, which made it easier for her to remember and discuss her concerns with her doctor.

One audience participant, who worked in a dialysis center, stated that she was very concerned even raising the issue of sex and sexual functioning on the dialysis treatment floor because she didn’t want to discuss such a private issue in public. Many patient participants in the audience chimed in that they wished the healthcare professional would at least bring the issue of sex up and then a mutual patient-healthcare professional decision could be made about when, where and how to discuss the concerns.

What Should I Do?

Using the knowledge you have gained from the participants at the Annual Convention, there are several areas you can look to improve your understanding of your of your sexual and relationship needs. One of the first things you can do is educate yourself. By understanding the effects your medications, diet, kidney disease or other medical issues have on your sexual functioning, you can begin to relieve the stress you may be feeling about being at fault for your sexual difficulties. To educate yourself, you can search the Internet, ask questions of your healthcare team at the dialysis facility, or seek the advice of therapist or counselor who specializes in healthy sexual functioning.

An additional issue that is important to address in your intimate relationships is the expectations you have of one another. By communicating with your partner, you can begin to explore the challenges of kidney disease and make changes in how you express your intimacy with one another. Remember, having kidney disease isn’t just about managing your clinical outcomes, but it is also about living well and being happy with yourself and those to whom you are close.

Mark Meier, MSW, LICSW, is the consumer services coordinator at the Renal Network of the Upper Midwest, Inc., and serves on the AAKP National Board of Directors. He is also the recipient of the 2004 AAKP President’s Award and the 2005 NOVA Award.

This article originally appeared in the November 2005 issue of aakpRENALIFE, Vol. 21, No. 3.

Back