When Illness Enters a Patient’s Life, Intimacy can be a Casualty

 In Live Events, MedX 2015

By Ana Santos

Today at MedX, a panel of patients, providers and researchers got together with one question in mind: how to reclaim intimacy?

SUNDAY, Sept. 27 – Illness, acute or chronic, can have a dramatic impact in patients’ sexuality. Many people experience pain, reduced energy, and changes in how they feel about their body image and intimate relationships. There’s a consensus among doctors and patients that such problems are worsened largely because of incorrect information and assumptions about the effect of their illness. Yet, there is a major gap in doctors’ willingness and ability to talk with patients and caregivers about intimacy and illness.

Sarah E. Kucharski, Justin Halls, Alexandra Drane, Matthew Dudley_intimacy & illnessTo shed light into such a critical component of whole-person health, Medicine X 2015 promoted the panel “Illness & Intimacy,” moderated by MedX Executive Board Member Sarah Kucharski. The session explored different aspects of the issue, from how a decline in physical intimacy impacts healing; to what successes and failures couples have experienced in trying to maintain or re-establish intimacy after an acute illness or throughout a chronic illness.

In her opening statement, Alexandra Drane, co-founder of Eliza Corporation, said that from the three thousand hours of medical training that doctors must undergo in order to practice, only 5 to 10 hours are dedicated to sexuality education. “There’s a lot of evidence that doctors don’t bring up certain topics because they don’t know what to do about it,” she added, while being supported by Dr. Matthew Dudley, a physician and Medicine X ePatient Scholar. Dudley spoke from a place of personal experience. He believes that adequate training is preeminently associated with feeling comfortable addressing patients’ sexuality and should be a priority for medical education. “It goes back our training and lack of long-term connection with patients,” he said.

While the lack of attention to sexuality rooted in medicine education poses a major challenge to patients seeking information, it should not be considered an end. For artist Karolyn Gehrig, who was diagnosed with Ehlers-Danlos syndrome in 2003, if your primary clinician is unable to help, look further. “Remember that you are still a sexual person but might need to explore new ways to enjoy your sexuality,” she said, “disability can often function as a feature, not a bug, because it forces innovation.”

In addition, patients must strive for self-acceptance. For medical student Justin Halls, from Tulane University, “allowing our imperfections to become the accepted perfection of our experience of life” is a philosophy that could help patients cope with the struggles and re-discovery of their own body. “We need to accept the whole part of us, that is biological and ultimately not permanent,” he said.

An important part of overcoming this deep and troubling issue, however, may be beyond the doctor-patient relation, and reside in the partner-turned-caregiver relationship. As Gehrig pointed out, caregivers are often misrepresented in popular culture. “We are constantly forced into roles, the dying patient and the white knight caregiver, thinking that our lives need to resemble these movies… We need to break out of it and think, ‘I am a person, not a movie character,’” she said. It is undeniable that when a partner is ill, there is an emotional cost to caregiving. But this should not deprive the couple from the intimacy once enjoyed. At the core of the solution is an open mind and communication; finding ways to talk openly about challenges is the first step toward effective problem solving and the feelings of closeness that comes from it.

With the right approach and trust, which must be the foundation of every relationship, intimacy does not have to disintegrate after a difficult diagnosis. That is true for patients, caregivers and doctors alike.

anaAna is an MA student at Stanford’s data-driven journalism program. She has extensive experience with reporting and corporate communications in her home country of Brazil and in Europe. Find her on Twitter at @anacrochas.

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