Q&A with Iris Zink, MSN, RN, ANP-BC
President, Rheumatology Nurses Society
What are some of the ways that rheumatologic diseases can affect a woman’s physical sexual function?
Sexual function can be affected in various ways, depending on a person’s unique diagnosis. For example, both Sjögren’s syndrome and systemic lupus cause vaginal and oral dryness. Diminished vaginal moisture can cause intercourse to be painful, and penetration can cause bleeding and tears.
Across disease types, there are some common issues that arise. Pain and fatigue can be consistent challenges, as can neuropathy. Patients with osteoarthritis and Sjögren’s syndrome may have issues with a lack of sensation in the clitoris or vaginal area, requiring additional stimulation to achieve orgasm.
For women who experience some of these challenges, what strategies for management do you recommend?
I encourage all patients to maintain their sexuality, as their physical symptoms allow, despite the diagnosis of a chronic illness. Sex makes us healthier. Patients who maintain intimacy are happier, and their pain threshold is better.
For many women, tools can come in handy. We recommend tools all the time to make kitchen and gardening tasks easier, so why not tools for the bedroom? For patients suffering from diminished vaginal moisture, these can include lubricants, which are essential during sexual play. Estrogen cream can also be used to help with moisture and to reduce the risk of vaginal and labial atrophy.
I often pass out the Pure Romance catalog to my patients. Pure Romance representatives are trained through the Kinsey Institute at Indiana University, and they know their products. The lubricants are pH balanced and do not contain ingredients that may make dryness worse. They also have a line of vibration tools to help with stimulation for women dealing with neuropathy who may need more external stimulation to achieve orgasm.
I also tell all my patients to perform Kegel exercises when they brush their teeth. These exercises help increase blood flow and prepare for sexual activity. In extreme cases, penetration may not be possible, but that doesn’t mean that women with vaginal dryness cannot have some other form of intimacy with their partner.
How can physical challenges to sexuality affect a woman emotionally?
Women who are diagnosed with any chronic disease go through different stages of grief in the wake of the diagnosis. There is depression associated with the diagnosis and often anger and bargaining before acceptance of the disease. Just receiving a diagnosis of any chronic illness can make a patient feel like her body has let her down or that she did something wrong that caused the disease. When you are angry with your body for letting you down, it is hard to focus and love yourself enough to have an orgasm. Fatigue can also play a huge part in this. Counseling can help patients work through the changes associated with a diagnosis.
My advice to patients: Fight back. You are no less of a woman despite the chronic diagnosis. Part of being a whole person is acknowledging that we are all sexual beings. Sex feels good and makes us healthier. So have at it.
What are some challenges that couples can face when encountering the physical and psychological impact of a rheumatologic disease on their intimate relationship?
Couples face the same challenges. The spouse or partner of a woman with an autoimmune disease oftentimes feels powerless about how to help. The partner doesn’t want to hurt the patient, so often the spouse or partner pulls back. This can make things worse, as the woman with the diagnosis feels like the partner sees her as a sick person instead of a sexual person. I would encourage patients to engage in open communication about needs and symptoms. It is always best to talk when everyone is clothed and prepared for the conversation. I usually suggest that the patient or partner start the conversation with the simple statement “I miss you” or “I miss being close to you.”
Understanding that each woman will have unique challenges related to sex and intimacy based on her diagnosis and various personal factors, are there universal steps patients can take to work through these challenges?
I would encourage all patients to recognize that every person is a sexual person. If you look at a wheel of health, healthy people are that way due to balance among the physical, sexual, social, mental, and spiritual selves. We are all sexual as part of our sexual selves regardless of age or disability. We all express ourselves sexually and should be free to—so long as our expression is healthy and occurs in the appropriate setting. Therefore I would tell all patients to do their Kegel exercises daily, stay sexual even if penetration is not possible, routinely communicate their needs and feelings with their partners, and take care of themselves. Rest, hydration, good nutrition, and eliminating stress help the physical self and also the sexual self.
What can partners do to help build healthy intimacy in a relationship in the face of illness?
Communicate, communicate, communicate. If there is a sexual or intimacy problem, most of the time it is due to a lack of communication. If there is old resentment in the relationship that has not been resolved, intimacy may not be possible. Intimacy is essential to any relationship. For some, intimacy may be hugging and kissing or just physical closeness. For other patients intimacy means intercourse, though this may not always be possible throughout the lifespan just due to aging. The key is to find and maintain some form of intimacy to keep the bond strong, especially in the face of chronic illness, to relieve the sense of isolation that patients can have.
Iris Zink, MSN, RN, ANP-BChas been working as a rheumatology nurse practitioner for 15 years and is the president of the Rheumatology Nurses Society (RNS). She has lectured extensively both locally and nationally to university students, nurse practitioner organizations, and registered nurses on a variety of topics, including psoriatic arthritis, management of chronic pain, Sjögren’s syndrome, lupus, and intimacy and chronic disease. She has been published in The Rheumatologist and Lupus Now and was content editor for the RNS’s Core Curriculum for Rheumatology Nursing*, to which she also contributed a chapter on HIV and arthritis. Prior to her work as a nurse practitioner, Iris was an intensive care nurse for seven years; she has found her passion in the education and care of those with multiple chronic, life-changing illnesses.*
The Rheumatology Nurses Societyis a professional organization committed to the development and education of nurses to benefit its members, patients, family, and community. To learn more visitrnsnurse.org.