The topic was sometimes discussed in hushed whispers in the middle of MetroHealth’s spinal rehabilitation gym.
There, patients prepare to return home after trauma to their spinal cord – a car crash, a fall, a gunshot wound. The injuries can paralyze patients, making it difficult to walk or feel touch. At the rehab gym, patients work with occupational therapists to re-learn and adapt to daily activities: getting dressed, cooking dinner, taking a shower.
Therapists often hear from patients, though, about another daily life activity that isn’t built into the curriculum: sex and intimacy. The challenge is that there hasn’t historically been a great environment to have that conversation, said Gillian Gulan, who has worked as an occupational therapist at MetroHealth’s inpatient rehabilitation unit with spinal cord injury patients for 15 years. She said patients and therapists often end up having to discuss it quietly while working through other exercises.
“In the middle of a gym, it’s extremely awkward,” Gulan said.
Gulan, alongside the MetroHealth Foundation, decided that they wanted patients with spinal cord injuries to have a better space to discuss how to adapt their sex lives. They applied for a grant from a national philanthropic group and received it. That’s where the hospital’s new adaptive intimacy lab, which opened this summer, was born.
It’s a private room set apart from the rest of the gym, stocked with a bed and mobility aids that can make sex more accessible for people who may be in wheelchairs or have other physical limitations. Patients can visit the room to learn about the devices and how to use them comfortably and safely.
The addition of the lab is also a mindset shift, Gulan said. She’s worked to add education for patients and medical staff about sexuality after a spinal cord injury. She hopes to see conversations about sex become less taboo and more of a norm. That’s important, said Will Baker, a peer support coordinator with the United Spinal Cord Association’s Northeast Ohio Chapter. He was a patient at MetroHealth’s spinal cord rehabilitation unit after a car accident about six years ago.
Baker said many of the people he mentors, who also have spinal cord injuries, have questions about sex and intimacy. They want to know if it’s still possible. Anything to open up the conversation is a step forward, he said.
“A lot of people assume that just because … you have a spinal cord injury that, you know, your life is over sexually,” Baker said. “Which could be the furthest thing from the truth.”
Since the intimacy lab opened this summer, patients young and old have taken a peek inside. One woman told Gulan she wasn’t having sex any more, but she still wanted to see the room. Young men are often apprehensive but hopeful as they assess the room, unsure yet of what each piece of equipment offers. Couples come in, too, and are able to practice different positions that might be comfortable – fully clothed, and typically with an occupational therapist beside them.
It can be a little awkward, Gulan said. But occupational therapists already work closely with patients on other intimate parts of their lives, like using the bathroom and bathing. Sex is just another activity of daily living, Gulan said – even if it’s commonly known as the “forgotten” one.
How the adaptive intimacy suite works
Gulan said the culture, historically, around treating patient’s sexual needs in the rehab unit involved waiting for patients to bring it up first.
She’s trying to change that. An evidence-based model she suggests involves therapeutic staff asking patients if they would like to talk about sex in the wake of their injury. Often, this conversation arises two weeks into a patients’ treatment, when patients are working on bowel and bladder care.
“I’ve only had maybe a handful of people say they’re not ready to talk about it,” Gulan said. “And that’s appropriate.”
Baker said he doesn’t remember discussing intimacy while he was staying at the hospital for spinal cord rehabilitation. That was okay with him, he said. At the time, he was more concerned with getting strength back in his hand and learning how to live life in a wheelchair. But he said patients who have moved back home and are still coming to the hospital for physical therapy would likely have a great use for it.
Gulan said the same conversations are happening on the outpatient side of recovery from spinal cord injuries, too. And occupational therapists aren’t the only ones who can help. Gulan said she’s trained physical therapists and speech therapists, who also work with spinal cord injury patients, on how to talk with patients about sexuality.
The intimacy lab is a comfortable place to have those conversations. Set up like a bedroom or a small apartment, it’s a place where patient and therapist discuss resources – like websites and videos that discuss intimacy after spinal cord injuries – and aids to adapt a patient’s sex life. Large wedges on the bed help patients position themselves stably during intercourse. Another device helps people with limited mobility recreate a thrusting motion.
Simulating the use of these technologies can help patients decide whether they’re worth buying themselves. One person Gulan spoke with who hadn’t used the intimacy lab said he had invested $800 in a sexual mobility aid that ultimately gave him “horrible spasms.”
Conversations in the lab sometimes veer away from what occupational therapists like Gulan can assist with, such as erectile dysfunction. By discussing it, therapists can point patients to the hospital’s sexual health clinic, where doctors and specialists provide medication or other treatment.
“We’re now making referrals out to them in a much more fluid way … since we were able to identify it better here,” Gulan said.
How the intimicy lab got off the ground
The Christopher and Dana Reeve Foundation is a national philanthropy focused on spinal cord injuries. Each year, it makes grants available for projects to improve the quality of life for those with paralysis.
The organization has to parse through 350 to 400 applications to choose fifty or so to fund, said Mark Bogosian, director of engagement at the foundation. The idea for the intimacy lab stood out, he said. That’s because lack of intimacy can contribute heavily to people’s mental health but is under-discussed, he said.
“I see this as a national model,” Bogosian said. “What they have done has to be replicated across the country.”
MetroHealth houses one of 18 federally-funded “model systems” for spinal cord injuries across the country, which means it provides health care and conducts research. In October, Gulan presented the intimacy lab grant to the 17 other centers. Some already have similar set-ups and educate their employees about discussing intimacy post-injury. But not all of them.
“Some of the other facilities, though, did say to me: ‘Whoa. Wait, what are you guys doing? How’d you do that?’” Gulan said. “Can you share more about how you guys have this set up, and what staff training you use?’”
The $25,000 grant is for one year. But the lab will continue to be at MetroHealth and part of the spinal cord rehabilitation institute after the year ends. Gulan sees all the ways it can grow. She hopes to connect it more to the hospital’s sexual health clinic and to its adaptive life technologies lab, which lets patients test tools that help with returning to work or living at home.
Baker also sees potential for more Cleveland residents to use the lab. Many of the people with spinal cord injuries who he mentors have been out of the hospital for years. He suspects some of them would be interested in seeing the room, too.
“It would be a benefit because some individuals might not know of all of the things that are available,” Baker said.
