Last August, I sat in a conference room during Woodhull's Sexual Freedom Summit that was jam-packed with sex bloggers, educators, activists and sexuality professionals of all stripes. JoEllen Notte presented the results of her informal research on sex and depression, topics that, while talked about more frequently these days, are still heavily associated with shame. Talking about them in relation to one another is also relatively new territory.
Notte, also known as the "Redhead Bedhead," is a writer, blogger, and mental health advocate whose journey started after the dissolution of what she describes as a sexless marriage at age 32. She starting talking to people—interviewing them to learn as much as she could about their sex lives—and upon determining that others had issues with their sexuality too, she started writing.
At the start of this year's Woodhull Sexual Freedom Summit—which goes through this coming Sunday—I spoke with Notte about her upcoming presentation and what she found when she spoke to 1,300 people about navigating sex, relationships, and depression.
VICE: When did your research about sex and depression begin?
JoEllen Notte: About two years ago. I'd written about the topic a couple of times, and the response was always overwhelming and covert. I'd get a ton of emails and private messages full of thanks, stories of experiences with depression, and relief to see it talked about publicly. But even while celebrating the fact that the topic was being discussed out in the open, they wouldn't post about it on Twitter or Facebook. That got me thinking about how many of us were having these experiences and feeling like it wasn't okay to talk about it publicly. I knew I wanted to write more about it, but I wanted to give other folks a chance to voice their experiences as well.
I started with a completely anonymous survey and gave folks an option to be interviewed. The survey was conducted in the fall of 2014 and the first round of interviews were in the spring of 2015. I wanted to make the interview process more accessible to folks dealing with depression, so I created a second interview that was conducted entirely online in the spring of 2016.
What sorts of questions did you ask?
The interview questions were about personal experience, relationships with partners, and relationships with healthcare professionals. If I had to sum up the results in one sentence it would be this: Depression is such a hard thing to face, and when we feel unheard, unsupported, and not believed by the people around us—especially those whose support we need the most—it can make facing it unnecessarily hard.
What did you learn from the first round of interviews?
The first round uncovered a flaw in the initial survey that makes me facepalm to this day! The first survey included a list of possible depression symptoms that included "decreased libido," but didn't give any option for the possibility that folks were having more sex when they were depressed—which turned out to be fairly common. I'd bought into the pervasive societal messaging that depressed people don't want sex and built that bias into the question. The second round of interviews allowed respondents to explain the impact of unmedicated depression on their sex lives in an essay question format, and over 25% reported an upswing in sexual activity. It was huge and made me more diligent about leaving room for people's stories.
While I'm glad we did the survey and I have the numbers I do, it's important to remember that it's an informal survey, not scientific research. I didn't set out to prove or disprove anything; I set out to help people feel heard. The survey accomplished that in its own way. When we go to conferences, people are thrilled to hear those numbers. For folks who have had their own experiences discounted, it's incredibly validating to see numbers that show those experiences are real and that they're not alone. People's stories matter, and they're yearning to talk about this.
Are there any specific insights you'd like to share?
I observed how couples navigated depression together. For example, couples where both parties had experience with mental illness tended to be better equipped to handle it. I also found some common refrains when it came to what is and isn't helpful. No one likes it when their partner tries to "fix" them.
Did you have any notable outlier responses to the interviews?
The project deals a lot with sexual function being hindered by medication's side effects, and I had a small contingent who were all taking the one antidepressant that is known for not negatively impacting sexual function and, in some cases, raising libido. After a while, I thought of stuff in terms of "unless you're on that drug."
It's my policy to not name drugs, as people have an unfortunate tendency to read a drug name on the internet and try to make medical decisions based on the fact that if a shiny website said it, it must be right for them. Apart from that, while that particular drug has a lower likelihood of sexual side effects, it is regarded as a not-very-effective antidepressant—this is coming from my research consultant, Stephen Biggs.
These people's experiences aren't "exceptional," necessarily, but in context of a project that is talking largely about lowered libido, anorgasmia, erectile dysfunction, decreased lubrication etc, coming across the people who were reporting no change in sexual function or increased desire stood out.
Can you give me an example of what you'll be presenting at Woodhull, or some advice you'd give readers based on what you've learned?
I'm on a mission to dismantle the adversarial approach to depression in loved ones that society has accepted as right for so long. Many of our respondents talked about resentment and tension between partners when one was dealing with depression and the other didn't understand it. I have written, and the interviews have confirmed, that when one partner is dealing with depression, one of the best things a couple can do is get on the same page, become a team. Otherwise the dynamic becomes "healthy partner" vs. "depressed partner and their depression," which is frustrating, counter-productive and, frankly, kind of mean. No one wants depression as their teammate! At Woodhull, we'll be talking about tools and strategies for making sure partners are on the same team, speaking the same language, and both getting the support they need.
It's such an important issue; sex and depression are taboo topics on their own and become even more so when you put them and relationships all together. It's hard to know how to work with that in a healthy way, we don't really have examples for what that looks like.
Yes! Two years ago I went hunting for resources for a partner and was kind of appalled by how much of what was out there treated depressed partners as threats to be managed.
Are you hoping that your research is going to change the medical understanding of sex and depression?
My intention with this project was to give people a voice and help them feel less alone in this experience. I never really expected it to go the direction it has, with all the research; that's been a pleasant surprise. It all started because people felt they weren't being believed, particularly by the medical community, so I suppose the fantasy would be for someone with the resources to get curious about how to help and actually do something about it.
What is your ultimate goal with this? What do you need to accomplish that goal?
My ultimate goal is to write a book. As for what I need, the answer to that is a bit of a personal one: I need to be healthy. This is a bit of a passion project, as I have over a decade of experience with depression and its accompanying physical and emotional symptoms. I'm working with my doctors, taking it one day at a time, and trying to remember to treat myself like I advise others to treat their depressed partners. Ultimately, though, my goal is to use this work to create a book that people dealing with depression can find validation in and that partners can use to help navigate depression together, as a team. When depression enters a relationship, it can feel like things are happening that neither partner understands. I want to help folks figure it out together.
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Photo by JoEllen Notte