Sexuality, Intimacy and Neurological Disease

Kristoffer Rhoads, PhD, Neuropsychologist, Virginia Mason Medical Center, Seattle, WA

Most people familiar with neurological conditions are aware of the physical and cognitive symptoms that classify them as diseases of the nervous system. Other prominent and all too frequent symptoms, however, are less often discussed. These include depression, anxiety, behavioral disturbances and personality changes. Rarely discussed are the changes in sexual functioning and intimacy that frequently accompany such conditions. Several studies have highlighted the fact that more than half of men and women with neurological diseases report changes in (or problems with) desire or sexual functioning. Despite these staggering figures, the barriers to discussing these problems persist, including lack of quality research in the area, taboos about sexuality in the elderly (who are at increased risk for disease) and those with neurological disease, and feelings of discomfort when talking about difficult topics. This article provides a starting point for patients, partners and providers to start talking about ways to improve sexuality and intimacy for those affected by neurological disease.

The first step is attempting to clarify your concerns and feelings in your own mind—and then talking about them with your partner. Recognize and address the emotional stresses of the illness, care-giving, and care-receiving. A good place to start may be to spend some time thinking about the following questions: “What do I need? What do I want? What’s missing? What’s working?”

A frequent and sometimes sizeable barrier to discussing intimacy and sexuality can be our own internal discomfort with the topic. There may be internally held beliefs that “good boys and girls don’t talk about these things.” Rest assured that they indeed do. The anticipatory anxiety and fears of discomfort are often worse than any actual embarrassment that may arise when partners find the courage to begin the conversation. Clarifying some of these issues in your own mind may be a helpful first step in getting the conversation started.

Once you’ve begun this internal clarification process, start talking with your partner. Communication is critical! This cannot be overstated. One of the most essential ingredients is listening. Learn how to listen actively and effectively—there’s a clear distinction between listening and waiting to talk. Avoid “mind reading” or assuming what your partner means before they’ve fully expressed themselves. Don’t be afraid to check in and make sure you understand them fully before you respond. Learn, or rediscover, what makes you and your partner feel heard and validated when you are talking. Talk frankly and openly about sexual and intimacy needs. Be clear about what you want, what you need, and what will suffice if you can’t have those exact things. It may also be beneficial to identify and then relax your expectations on time limits for communication. Try writing or typing to each other if verbal communication is difficult or laborious and motor changes don’t rule this out as a means of communication. It may be helpful to schedule a time to talk about this when energy and mental acuity is at it’s highest; at the very least, avoid those times where one partner is overly tired or stressed. Couples or family counseling may be helpful to learn effective communication and listening skills, as well as effective ways to negotiate and compromise. Should you pursue this option, look for a counselor who is well-versed in communication training and neurological disease or behavioral medicine.

Part of your discussions should include what defines intimacy. Many people think of intimacy and sex as the same thing, but there are important ways that couples can experience intimacy without intercourse. Find other ways to be close to one another that de-emphasize sexual intercourse. Talking openly and honestly about what matters and even talking about your fears and concerns can be intimate. Demonstrate love, respect, warmth and togetherness in non-sexual ways, such as holding hands or each other. Kissing and caressing are often where couples begin—revisit this with a newfound curiosity and sense of openness. If sexual intercourse is possible, experiment with different routines (e.g., switch lovemaking to the morning, try different positions, etc.). As difficult as it may be, the desire to break out of the old routines and adapting to your challenges are the most important ingredients for redefining and rediscovering intimacy.

After you’ve begun the conversation with each other, it’s time to talk to your doctor about treatments, effects of medications, and possible referrals to specialists or counselors, if needed. Treatments for men have received much attention and include oral medications, injections, pumps, vacuum devices, or prostheses. For women, there are oral estrogens, creams, lubricants and devices to provide added stimulation. Keep in mind that not all interventions will work for every individual, every relationship, or every situation. Again, perhaps the most critical intervention is to maintain your curiosity and willingness to keep looking for answers, as well as your ability to keep talking with each other.

In addition to the steps above, it will be critical for you and your partner to keep working toward solutions—repeating the same conversations and experiments as necessary. Acceptance of where you are and “what is” will be important, as will be the need to shift your focus from “what you can no longer do” to “what you can still do.” This is no easy task given all of the demands of care-giving and the toll taken by health problems. However, remember that you will not find the time for intimacy — you will have to make it!

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