Let’s Talk About Sex: Why Treating Intimacy As a Clinical Symptom Matters

Published February 8th, 2021 | 5 Minute Read

Sex and intimacy are important aspects of a person’s quality of life and can have a significant impact on physical, emotional and mental well-being. For people living with chronic health conditions, issues that arise, whether a result of the condition itself or treatment-induced, can have a considerable impact on their relationships and their experiences with sex and intimacy.

These issues can impact their ability, willingness or interest in sex. They can lead to additional physical or emotional symptoms, or compound ones that already exist. They can cause people with a condition – not to mention their partners – to feel unattractive or feel like their needs are unimportant. They can cause relationships to unravel, or stop them from even beginning.

In a healthcare setting, however, these challenges are often overlooked in favor of clinical – and necessary – discussions about efficacy, tolerability and safety. However, physicians and the healthcare industry as a whole can help people overcome some of these issues by recognizing them as a real challenge and taking steps to start a dialogue. Prioritizing the issue with information, support, validation and open discussion can be critical for improving overall well-being, while also helping people stay on treatment and better manage their condition.

An analysis of findings across Health Union’s large-scale, syndicated In America surveys – conducted regularly for all of the company’s condition-specific online health communities – shows sex and intimacy can be greatly impacted by a person’s condition, including the symptoms and treatment side effects that one experiences.

Pairing this data with perspectives from individuals engaging with these communities reveals this isn’t just a secondary issue. It’s an important one that is often overlooked, misunderstood or not taken seriously by friends, family and healthcare professionals.

The impact on intimacy issues can vary greatly depending on the condition. And, for the most part, no two people with the same condition have the same experiences. However, the findings show the impact on intimacy appears, in some shape or form, within a substantial number of people across various communities. 

For example:

  • Nearly four in 10 Psoriatic Arthritis In America 2020 survey respondents said their respective conditions made it hard for them to be intimate.*
  • 42% of Sleep Disorders In America 2020 respondents living with narcolepsy said their condition impacts intimate relationships.*
  • A fifth of Asthma In America 2020 respondents said their asthma impacts their intimate or sexual relationships.*

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One Asthma.net advocate said “talking about asthma, intimacy and sex can feel uncomfortable, but it is important because this is an aspect of your asthma that can feel alienating.”

Impact on Sex & Intimacy Can Have Far-Reaching Physical, Emotional Implications

For some, sex and intimacy can unfortunately have troubling effects that could lead to a mixture of physical, mental and emotional health concerns. For example, 8% of Migraine In America 2020 respondents counted sexual activity as one of their migraine triggers.

For many more, various symptoms and side effects of treatments, such as chemotherapy, and surgeries have caused hurdles for sexual activity. Based on 2020 In America survey findings: 

  • Seven in 10 prostate cancer respondents have experienced erectile dysfunction.
  • 41% of advanced breast cancer respondents have experienced sexual issues or vaginal dryness.
  • A quarter of bladder cancer respondents have experienced sexual issues.
  • 44% of endometriosis respondents said they feel their condition prevents intimacy.*

The relationship between chronic health conditions and sex and intimacy can cause a lot of emotions to take center stage. For example:

  • Nearly three-fourths of IBD In America 2019 respondents with Crohn’s disease – potentially some living with ostomy bags or who experience frequent bathroom trips – said their condition has made them feel unattractive or not sexy.
  • People with the skin condition hidradenitis suppurativa experience painful lumps and infections in various parts of their body, including their groin and genitals. This likely contributes to more than half of Hidradenitis Suppurativa In America 2020 respondents saying they fear sex and intimacy.*

As one Endometriosis.net patient advocate said, working through the effects of a chronic condition on sex and intimacy can take a serious toll on one’s mental health. “You have all sorts of feelings of inadequacy,” she said. “You feel guilty. You just feel like you’re not good enough.”

HCPs, Pharma Can Help by Providing Info, Facilitating Conversations

There are three main areas pharma marketers and others in the healthcare industry, including healthcare professionals, can help patients as they balance sex and intimacy with living with a chronic condition.

1. Discuss Sex and Intimacy or Facilitate Conversations. As the data show, this is an important issue for people with chronic health conditions. It impacts multiple facets of people’s lives, they are often unaware of that impact ahead of time and they might need support and validation to understand they aren’t alone in their experiences.

HCPs can help by proactively asking about and discussing sex and intimacy as it relates to symptoms, procedures, side effects and quality of life. Pharma marketers can find ways to facilitate conversations or partner with platforms, such as online health communities, that are already doing so. This will help them better understand the relationship and how they can modify their communications to better address the issue.

2. Don’t Overlook or Deprioritize the Issue. Many people with chronic conditions have lamented that sex and intimacy is often skimmed over by their HCPs, possibly due to concerns about privacy, sensitivity or awkwardness. 

Throughout the process of preparing and recovering from a radical cystectomy, one BladderCancer.net patient advocate was given details on just about every aspect and likely effect of her surgery. However, there was only one fleeting mention of how the surgery would impact her ability to have sex; a physiotherapist quickly brought up but then brushed aside the topic before just giving her a handout of exercises she could do.

Some feel their concerns about sex and intimacy are deligitimized or deprioritized in place of other issues that might seem more important or more comfortable to discuss. For example, the previously mentioned Endometriosis.net patient advocate notes that she has consistently raised concerns about pain during sex, a symptom that can impact condition management, as well as various aspects of quality of life. Despite her concerns, she said her HCPs always turn the conversation back to fertility.

The relationship between intimacy and living with a chronic condition is an important one regardless of age or relationship status. Although the impact and journeys will be different, it can be a topic of equal importance for young people looking for love, older individuals who have been married for decades and everybody in between.

3. Provide Information. Simply put, people want information about sex and intimacy:

  • Among a list of topics, more Prostate Cancer In America 2020 respondents said they were interested in content around sexual health and intimacy than any other topic.
  • 11% of Lupus In America 2020 respondents said they were interested in content around dating and intimacy.
  • 19% of 2020 survey respondents with cystic fibrosis – a community that is living longer due to treatment advances – said they were interested in sex and intimacy content.

By providing relevant resources or partnering with entities that do, pharma marketers and HCPs can show they understand an important aspect of the patient journey and want to help improve healthcare experiences.

Engagement on Health Union’s growing portfolio of online health communities combined with large scale, patient-reported data from its syndicated In America surveys can offer unique insight and understanding into nuances of the patient journey experienced by different groups of patients. Learn more about Health Union’s custom media, marketing research and clinical services that can help you create smarter, more effective solutions for patients and caregivers.

*represents top two selections on a seven-point scale

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