Unspoken and Undiagnosed: Addressing Sex and Intimacy Issues in Rheumatic Disease
Sexual dysfunction and intimacy issues may rank high among the complaints reported by patients with rheumatic diseases, but these complaints often remain unaddressed in the clinical setting, for several reasons. Poor communication between physicians and patients is the most likely explanation, along with poor communication between patients and their partners. However, the reasons for this communication gap, which may range from stigma to time constraints in the clinic, are up for debate.
Ara H. Dikranian, MD, a rheumatologist at the Cabrillo Center for Rheumatic Disease, discussed the parameters of the discussion in an interview with Healio Rheumatology. “A couple of years ago, I noticed a disconnect between objective measures of disease activity, like scores and indices, and the overall satisfaction of patients,” he said. “The disconnect seemed to come from various places, but one area was in the personal lives of patients. Specifically, their relationships and the intimacy of those relationships.”
Patients often rated their overall quality of life as poor, even when parameters of disease activity indicated mild or moderate disease. “Patients would often say they are going through it alone or that no one understands them,” Dikranian said. “Their family might understand what the disease is, but a lot of the toll that arthritis takes is without proper language to talk about it. This becomes an unmet need.”
Logan Levkoff, PhD, a sexuality and relationship educator and contributor to www.arthritis.com, expanded about the trouble with communication. “Patients are given a lot of medical information about their [rheumatoid arthritis] RA on a regular basis,” she said. “But we found relating that information to intimacy, sexual function and dating were under-addressed. People do not talk to health care providers about sexual function enough.”
Part of the problem is there is not enough time in a standard office visit to address all the clinical concerns, much less quality of life components such as these. However, unwillingness on the part of both the physician and the patient is also a factor, according to Levkoff.
“Both parties may be unwilling because of stigma or embarrassment,” she said. “There is also a perception that RA physicians do not have all the facts about these particular concerns.”
It is for this reason that Iris Zink, MSN, RN, ANP-BC, president of the Rheumatology Nurses Society, has been working on a manual for physicians to use. “I have been giving a lecture on intimacy and chronic disease for about 12 years,” she said. “Health care providers kept stopping me and saying they wish they had a manual.”
Almeida and colleagues wrote that sexual dysfunction often remains underdiagnosed for two principal reasons. One is the shame or frustration experienced by patients, and the other is the failure of physicians to address the issue. The researchers suggested that although clinicians are becoming more comfortable addressing a wider array of issues not necessarily related to RA, they still have difficulty broaching the subject of sexual dysfunction. It is necessary for clinicians to have a deeper understanding of how to instruct patients on both general notions of sexual function and more specific components of sexual activity, including appropriate positions for RA patients and how to work with a multidisciplinary team of interventionists.
“Patients are always looking for as comprehensive of care as they can get,” Dikranian said. “They routinely have problems with diet, psychiatric components, sexual function and other aspects that are all indirectly related to the management of RA. From the perspective of a rheumatologist, it is important to understand that we are caring for the entire patient, their whole life and not just their disease.”
Caring for a patient with a complex set of symptoms like those arthritis presents can be difficult for a single provider like a rheumatologist, according to Dikranian.
“Even if we are managing their disease properly, other areas of their life are not being improved,” he said. “We need to take steps to understand why and we cannot do it all ourselves, as empathetic or experienced as we may be in rheumatology.”
Levkoff offered two critical pieces of advice. “A patient may not talk unless there is a close relationship with the doctor,” she said. “We encourage physicians to develop trust with their patients. Sometimes it is a matter of a provider simply saying at every appointment, ‘How is RA impacting your sexual function right now?’ After a while, it becomes routine and comfortable. Because a medical provider has said it, it validates that sex and intimacy are legitimate concerns.”
Dikranian echoed this sentiment and offered some practical advice. “One thing we can do as physicians is ask proactive questions about vaginal dryness, lack of libido or painful intercourse,” he said. “We should aim to determine what can be treatment associated, what can be part of the disease, what can be mental or psychological. It is important for us to make distinctions between these three.”
Another strategy is to include questions about sex and intimacy on an intake form, Dikranian suggested.
“If they can write this information down on a piece of paper before they even enter the exam room, it can serve as a springboard for conversation,” he said. “They do not even have to be direct questions about [erectile dysfunction] ED or vaginal dryness. They can be, ‘Has this happened to you?’ kind of questions, which are less threatening.”
The second point Levkoff made is that it is acceptable for a rheumatologist not to have all the answers to questions about sex and intimacy.
“Patients may feel more comfortable if physicians admit they need to refer them to a nurse or another ancillary practitioner,” she said.
This, then, suggests a team approach is necessary for patients with sex and intimacy issues. Although a team approach is optimal, Zink stressed the average rheumatologist should understand when to answer basic questions about sex and intimacy and when to hand the patient off to another specialist.
“You need to deal with whatever the patient wants to deal with,” she said. “They often say that intimacy is the most important thing in their chronic illness. Of course, we need to make sure the disease is improving and there are no reactions to the medications, but it is equally critical to talk about what is important to the patient.”
There is a caveat to handing a patient off too quickly, according to Zink.
“Primary care providers and other specialists who deal with these patients are also busy,” she said. “We do not want to add to their burden”
Overall, open dialogue leads to better outcomes and better health in general, according to Dikranian.
However, he said clinical measures should not be avoided. He suggested there is a great deal of variability in the symptoms and objective measures of RA.
“One would assume that the more inflammation and the higher the burden of RA, the more the patient is going to suffer in these quality of life (QoL) parameters,” he said. “But, we have noticed a discrepancy between symptoms and mood, fatigue and other factors that impact intimacy and sexual function.”
Dikranian said that traditionally, the thinking was that controlling the disease would yield improvements in QoL. However, this has changed.
“We have been trying to tease out what else is playing into these issues,” he said. “It may be physical limitations that prevent them from maintaining a previously active lifestyle or other pain generators, like fibromyalgia. But, it may also have to do with depression or other mood disorders.”
Most experts agree that faulty lines of communication run both ways, at least with this particular set of complications. Patients need to speak up.
It is a challenge in getting some patients to recognize that sexual health and function is a huge part of overall life and health, according to Levkoff. “They need to understand they have the right to talk about sexuality and intimacy issues,” she said. “Writing down a list and using it as a crutch can be helpful. Sometimes a patient can talk to a nurse in advance of the visit, but the patient has to be proactive.”
Levkoff has partnered with Pfizer to develop blog posts on www.arthritis.com to address ways patients with chronic conditions like RA can talk to their health care provider about relationship and intimacy challenges and navigate ways to improve communication.
Dikranian urged patients to continue to ask these questions because doing so can be empowering. “Just having the confidence to ask about sexual dysfunction can lead them to begin addressing those issues,” he said. “Acknowledging the problem can lead to dealing with damages to self-esteem and self-image that come with loss of sexual function.”
Many patients cite stigma as a stumbling block to talking with their providers and even their friends or partners.
“There is guilt. There are issues that people who do not have training in psychiatry will not be able to deal with,” Dikranian said. “But there are professionals who can make these patients understand that it was genetic programming that led them to acquire this disease, and whatever happened environmentally to trigger the onset is not necessarily their fault. We need to let them know there is no reason to be ashamed.”
Zink offered a different perspective. “Even though one in five women have an autoimmune disease, patients grieve when they are diagnosed,” she said. “They thought their life was going to be one way, but then they have to give up careers because of fatigue. [There is] not as much of a stigma as just a feeling of a huge loss.”
Zink offered one other consideration about patients. While it may feel necessary for a rheumatologist to refer them to a specialist, it is important to understand these patients already spending a considerable amount of time in physician’s offices. “How many providers do they see in a week or in a month?” she said. “They do not want to have to go to another one. Sometimes, the rheumatologist has to take the lead.”
Outside of the clinic, Levkoff said chronic illness can completely change the dynamics of a long-term relationship. “What previously might have been an egalitarian partnership becomes one where one partner is a caregiver,” she said. “Of course, at some point in any relationship, someone will be the caregiver and someone will receive the care, but with a disease like arthritis, these new roles can lead to dramatic shifts.”
The disease can also impact new relationships. “When to disclose a chronic disease is complicated,” Levkoff said. “There is no right time.”
Clear and honest communication is critical in dealing with these scenarios, according to Levkoff. “In new relationships, you should not shy away from who you are,” she said. “In long-term relationships, listening is important. It is also important to recognize there will be challenges and the relationship will not be perfect.”
Zink said when an individual has gone from being the dominant partner and the breadwinner in a relationship to the one who needs care, it can be crippling. “But these people still need intimacy,” she said. “Recognizing how the dynamic has changed is critical to bringing intimacy back into the relationship.”
Dikranian suggested the partner should be present at office visits. “Part of empowering the patient is to encourage him or her to present the full story,” Dikranian said. “What happens from visit to visit is patients can forget how bad they felt a month or 6 weeks ago, or that they got to work late because it took so long to get ready. Patients put on a brave face for their visit. Having a partner, family member or close friend to keep a journal, to remind the patient of a flare or bad day can be useful.”
Patients often end up living in a vacuum, according to Dikranian. “Their social network has to know what RA is, they need to know how much the patient is suffering [and] they need to allow patients to pace themselves,” he said. “If they do not, it can take a further toll on the patient and a considerable toll on the relationships.”
For Levkoff, it comes back to the notion that sexuality is a privilege or, worse, an ancillary concern. “Often patients are taught that sexual function should not be a priority,” she said. “Therefore, patients are entering our office already behind in their care.”
Costa and colleagues conducted a cross-sectional study of 68 women with early diagnosed RA to determine rates of sexual dysfunction. Participants were evaluated using the DAS28 and health assessment questionnaire, along with female sexual function index. All reported sexual activity in the previous 4 weeks. Most women were approximately 50 years old and more than 60% were married. Results indicated a mean DAS28 of 3.6 ± 1.5 and a mean health assessment questionnaire score of 0.7. Sexual dysfunction as assessed by the index occurred in 79.6% of patients. The researchers observed no association between disease activity or functional disability and sexual dysfunction.
“Sexual dysfunction among women is generally a fatigue issue,” Zink said. “They are still trying to be a parent and go to work and grocery shop, juggling so many things. Fatigue becomes the largest hurdle to intimacy. Then intimacy, in turn, is pushed way down on the list of priorities. The divorce rate in fibromyalgia is double the standard rate.”
Some men with rheumatic diseases report a lack of libido or a loss of virility, according to Zink. “We have heard women tell us that their husbands just stopped touching them altogether,” she said. “But, these are largely the result of physiological effects, like low testosterone levels. We also see this among men who did not take care of themselves before RA — those who were smokers or overweight in the first place.”
That said, more men do not lose levels of intimacy, for one simple reason, she said.
“Men tend to understand that intimacy always makes them feel better,” Zink said. “For women, it becomes just one more chore in a long list of chores.”
Newman wrote about arthritis and sexuality as early as 2007. Along with good communication between partners and timing of medications, they recommended creativity, experimentation, relaxation and fantasizing, and guided imagery.
Hari and colleagues also used the Female Sexual Function Index to determine sexual function among 60 women with RA and 40 healthy controls. They used the routine assessment of patient index data 3 and rheumatoid arthritis disease activity index 5 (RADAI5) along with DAS28 erythrocyte sedimentation rate to assess disease activity. Patients also responded to the female sexual function index for experiences within the last 4 weeks to determine whether they crossed the threshold for sexual dysfunction. Results indicated significantly more women in the RA arm demonstrated sexual dysfunction than healthy controls. This included desire, arousal, lubrication, orgasm and satisfaction. Women in the RA group did not experience more pain than controls. Multivariate analysis results showed that swollen joints and RADAI5 demonstrated independent associations with sexual dysfunction in the RA group.
“This study suggests that sexual dysfunction among women suffering from rheumatoid arthritis is found when a targeted questionnaire is used to identify it and that the increased disease activity has a negative effect of sexual function,” the researchers concluded.
All of this comes back to communication, according to Zink.
“The physician needs to know, and the partner needs to know the answers to some basic questions,” she said. “Is there pain during intercourse? Is there vaginal dryness? Is the man suffering from ED? Unless the provider brings it up, the patient will not be apt to talk about it. Patients desperately want to talk about these things, but most do not ask.”
As therapeutic options for RA become more diverse, Dikranian said it may be useful to keep an eye on how different drugs impact not just patient outcomes, but these QoL factors.
“The one that almost every patient would be familiar with is the impact of methotrexate on fertility and pregnancy,” he said. “As for overall management, there is no golden rule that you have to be careful about this or that drug. Pain can come from different sources. For now, most of the therapies directed toward RA do not impact mood or sexual function.”
Until new drugs come along, then, physicians should continue to work on communication. “An empowered patient leads to an enlightened physician,” Dikranian said. “We have to realize that not everything important to our patients is being addressed by our traditional discussions of RA activity.”
For Zink, it comes down to the practical work of creating a guideline for rheumatology health care providers to follow. “People are not comfortable talking about this and do not want to say the wrong thing,” she said. “We are trying to offer a step-by-step procedure for having this conversation.”
Levkoff took a broader view. “Many of us are raised with fantasies and fairy tales about intimacy and love,” she said. “The reality of joint pain, swelling and fatigue that comes from a chronic condition like RA can lead to something that is different from expectations. We are helping patients get over those hurdles.” – by Rob Volansky
- Almeida PH, et al. Rev Bras Reumatol. 2015;doi:10.1016/j.rbr.2014.08.009.
- Costa TF, et al. Rev Bras Reumatol. 2015;doi:10.1016/j.rbr.2014.10.006.
- Hari A, et al. Clin Rheumatol. 2015;doi:10.1007/s10067-015-2888-z.
- Newman AM. Nurs Clin North Am. 2007;42:621-30; vii.
- For more information:
- Ara H. Dikranian, MD, can be reached at email: firstname.lastname@example.org.
- Logan Levkoff, PhD, can be reached at email: email@example.com.
- Iris Zink, MSN, RN, ANP-BC, can be reached at 200 Pine Hollow Dr. #400, East Lansing, MI 48823; email: firstname.lastname@example.org.
Disclosures: Dikranian reports he receives funds from AbbVie and Pfizer. Levkoff reports she receives funds from Pfizer. Zink reports she speaks for Abb-Vie, Bristol-Myers Squibb and Cresendo Bioscience.