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A discussion of intimacy and illness at Medicine X: “Embrace yourself and embrace your normal”

21735972186_ef347da42d_zMedicine X is well known for shining a light on dark feelings and difficult-to-talk about topics, as well as being a safe place to hold such conversations within the health-care community. Last year, a key theme of the conference was addressing the relationship of mental and physical health. The discussion of treating the whole person, not just their disease or symptoms, was expanded this year to include sexual health.

In a Sunday session exploring intimacy and illness, Medicine X executive board member and well-known patient advocate Sarah Kucharski bravely spoke about her own relationship experiences as she led the discussion. "Illness completely changes one's relationship with one's body. It's the idea of feeling broken. Of feeling you're a burden. Of feeling not sexy," she said.

Diagnosed at the age of 31 with intimal fibromuscular dysplasia, Kucharski has undergone multiple surgeries, resulting in permanent scarring of her body. She shared with the audience her anxiety over romantic partners seeing the scars for the first time during intimate moments and suddenly having to answer their questions. She said, "To expose that visual reminder of my health, maybe it’s too much. Maybe it’s forcing me to be who I really am instead of enjoying a certain escapism," she said. "It takes away my opportunity to talk about my health."

Many patients and caregivers can relate to Kucharski's struggle with intimacy and illness. She conducted an informal online survey in preparation for the conversation. The biggest finding? There is no normal. But this reality often isn't conveyed in doctor-patient conversations. For patients who undergo a medical procedure or women who give childbirth, physician advice is usually to wait for a certain period of time until they are physically healed and then resume sexual activity "when they feel ready."

Matthew Dudley, MD, a hospitalist who works in Alaska, said one of the factors driving the lack of doctor-patient communication about sexual health is that "health care in this country is reactionary." He added, "We end up dealing with this emergent actions, and so you don’t get time to sit down and talk about these issues."

In addition, pointed out panelist Alexandra Drane, the medical education curriculum at many institutions doesn't dedicate enough time to sexual health issues. Beyond expanding the training of future doctors, she advocated for "normalizing the conversation" about intimacy. "This is a topic that most people really, really want to talk about. There needs to be training [for doctors] on how to have these conversations and how to make someone feel safe and normal," said Drane, co-founder of the Eliza Corporation.

But more training for medical students may not to be the silver bullet that resolves the problem, say some panelists. Dudely said he received a full two weeks of training on sexual health issues during medical school. "I thought at my school we did a good job," he said, "But in the day to day it gets lost. We need patients to go to their doctors and say, 'I want to know more about this.' As our culture becomes more open about these issues, I think it will come to the forefront.”

This point was echoed by Roni Zeiger, MD, co-founder of Smart Patients, who was listening in the audience. "Doctors are people too. Everyday in a practicing doctor's life, he or she has to deal with a whole mess of things that were never remotely part of [medical school] training," he said. "We have to give ourselves permission to talk about things that we aren’t experts in."

He reminded the panelists and attendees that doctors also struggle with their own intimacy issues. "I want to bring up, perhaps, the sexy elephant in the room," he continued. "Many physicians have problems in their sex lives... which could be a barrier in these types of situations."

The panel went on to urge both patients and doctors to reframe the conversation and their notions of sexual health. Karolyn Gehrig, an artist diagnosed with ehlers danlos syndrome, said, "In sex, disability can often function as a feature, not a bug - because it forces innovation. Rather than thinking of your body as deficient, start focusing on what you want, how you can get it and doing the things that you want to do. If you do this, you can have a healthy sex life."

Drane challenged the audience, and larger medical community, to help patients and physicians in being proactive in addressing sexual health issues. "Let’s not just admire the problem. Let’s all hold ourselves personally accountable." She noted that there are a number of programs and apps that address management of chronic illnesses, such as diabetes. She asked, "Why is there not a 'get back in the sack' program?"

As she concluded the discussion, Kucharski urged everyone in the audience and watching the livestream to “embrace yourself and embrace your normal.”

More news about the conference is available in the Medicine X category

Photo courtesy of Stanford Medicine X

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