For many, having a sexual relationship seems critical to life satisfaction. From a purely pragmatic viewpoint, sex is critical for life itself. Over the centuries, people have ended and began relationships for sex, married to have sex, killed over sex and taken remarkable risks where sex is concerned. Sex has long inspired the creation of music and poetry. Even the Bible has the Song of Solomon. Cushing’s Disease appears to hijack this very life force, leaving us to feel anger, loss and/or apathy toward sex. Many Cushing’s patients have incurred relational losses because of the challenges faced sexually and intimately. We often experience self-loathing, anxiety and depression due to physical and psychological changes. Research points to the complicated variables that exist when it comes to attraction, libido and sexual relationships. We know a complex interplay exists among various biochemical, psychological, relational, religious, familial and cultural components. This article will focus on the Three C’s of Sex: Compassion, Communication and Collaboration.
This article by no means will crack the code on such a complex subject, however, the objective is to normalize the complexity of our feelings toward sex, our bodies, and relationships, and offer tangible tips to support our recovery in this area. This article will not address sex from a spiritual stand point as I believe that is better left to clergy. That being said, nothing in this article is meant to offend anyone’s specific values. Please feel free to take what is useful and leave the rest.
The type of compassion I am referring to is self-compassion. It is all too easy to feel as though we are alone in our struggles with our body, emotions and relationships. We are not. As other patients have shared their various challenges, it has become clear that we often suffer from a sense of isolation, self-loathing and frustration. Some have lost relationships due to physical and mental changes. Some still want to have sex until they are having it. Some don’t want to until they are. Some feel too weak or are in too much pain. Some have libido and can enjoy sex but are not able to orgasm. Many report that their body and mind can’t quite agree. Some desire sex but can’t stop the racing thoughts. Others feel too tired to even consider the act. And then there is the chronic pain and joint and muscle deterioration. Sex is, after all, a physical act. Can we be patient with ourselves, curious rather than condemning, observing our feelings, thoughts and sensations without judgment – just noticing? From this place, our self-compassion may grow.
Tip #1: Listen to our internal thoughts. Would we talk to a friend as we talk to ourselves about our bodies? Try to talk more gently to yourself. We are healing, changing, little by little, daily, weekly. We have control over how we talk to ourselves and what we communicate to our bodies at a cellular level.
Tip #2: Listen to Kristen Neff’s self-compassion meditations at www.self-compassion.org.
Tip #3: Explore various forms of touch. Try regular massage. Most of all, try in little ways to embrace your body, note its resilience and its attempts to balance despite the cortisol levels. Some people report pain or a tickle-ish sensitivity upon touch, sexual or otherwise. Experiment with various forms of touch from firm to light to see if your body has a preference. Perhaps only a hand massage or foot massage feels good. Consider a pedicure. Visualize the healing taking place at a cellular level. Bathe in epsom salts with a favorite essential oil. Hug a friend. Cuddle a pet. Remember to daily nurture your body in little ways to fight the self-loathing, disgust and physical pain. The goal is to embrace rather than ostracize our bodies while they fight for our wellness with everything they have got. The self-compassion we find will fuel our ability to have conversations on our behalf with partners and the medical community. Your cells are always listening to everything you say, even in your head. Speak to them as you would a close friend or family member.
Many of us come from families in which sex was not talked about. I remember as a pre-teen hearing the word “masturbation” and asking my mother what it meant. Her reply? “Look it up in your Funk & Wagnalls”. So I did. Needless to say, I didn’t understand the definition I read but I somehow knew not to return to her for greater clarification! Therapists have long urged couples to engage in a more open dialogue regarding sexual needs, preferences and boundaries. This is challenging for a number of reasons. We may not want to disappoint or offend our partner, may not feel entitled to having our sexual needs met, may not believe pleasure is OK, and frankly may not want to say we have no interest. Once we work on our self-compassion, we will be in a better place to imagine having any conversation with our partner.
Much of sexual desire begins in the brain. Did you know that quadriplegics can orgasm? True. Clearly, that’s primarily a brain induced experience. It is the perception of the experience that got them there. Both men and women have reported waking up in the middle of an orgasm. Clearly, this is without help from anything but the mind at play, on its own. The communication happening inside our head can help or harm us. Women are also known for multitasking mentally during sex. For instance, many women with no chronic illness report that they struggle to focus only on sex, during sex. They can be creating the grocery list, contemplating the next day’s agenda, all while trying to be present during sex. Men have their own pressures to perform and the inability to fake an orgasm (not that faking orgasm is the goal here). So, once we infuse our self talk with compassion, we can now begin imagining what it is we would like to say to our partner, our doctor, a friend, about our needs or feelings toward sex, our bodies, our losses, our hopes and dreams. Cushing’s seems to affect everyone a little differently so your experience is your own. Only you can communicate that to another. No one else will have had quite the same symptoms and challenges.
In our breakout session on sex at the 2017 Patient Education Day at NIH, I referred to sex as feeling like a fiery torch entering my vagina. Because I was comfortable saying this out loud, I was able to share this with my partner as well as my doctor and dozens of you! Doing so brought relief and the ability to problem solve this so that I was no longer frustrated and incapacitated in this way. I also had to communicate about the limitations of having two total hip replacements. Unfortunately, my orthopedic surgeon was unable to give me the same flexibility I once had. Now, not everyone is going to be comfortable conveying these things to a partner, yet, the power in doing so is in the potential for the partner to have a better understanding and the opportunity to not take our changes, ambivalence or disinterest in sex personally. This gives the couple the freedom to be more creative, exploring what works and what doesn’t. For some, just being able to have sex with the lights off is enough. But to be able to convey that need can be challenging. I encourage you to do so. In addition, it is important to acknowledge that to make ourselves this vulnerable, we must believe we will feel heard and respected, received compassionately. Sex is at its best when it is light and playful, connecting, not a chore. The oxytocin released from any kind of safe and wanted touch, including sex and orgasm, is bonding. It somehow makes the sky bluer and the grass greener, at least for a day. It can make a couple feel closer immediately.
To partners out there, I invite you to open up a dialogue with your loved one. Ask openly what they need, want, don’t want. Be available to hear a sense of hopelessness and grief. You don’t have to fix it. It’s not about you. Yes, it affects you. Remember that the emotions in the moment are not permanent. The anxiety and depression are most likely a result of the disease and are also treatable. Ask if there is anything you can do that does feel good to your partner, sexual or otherwise. Maybe a foot massage, cuddling on the couch. Not personalizing the lack of interest and the emotional ups and downs is key to preventing your own burn out and sense of hopelessness or powerlessness. Seek professional support if needed. When partners stand by helplessly, asking what they can do to help, I remind them, the prescription is in the listening. It is not your job to fix, but to listen, non-judgmentally. In so doing, you are making your partner the expert in his/her own experience. For many Cushing’s patients, being heard accurately has been a challenge. This is your area in which to shine. Nobody knows your partner like you do. No one else can listen quite like you do. It may feel like you are doing very little but, after all, to be seen and heard accurately is essential to all.
Armed with self-compassion, begin to talk with your partner, using “I” statements. Follow the “I” with a feeling word. The reason for the “I” is that people hear us better when our sentences start with it. When we start a sentence with “you”, for example, people tend to feel immediately defensive or put off. Our goal is to create a safe space in which to share our thoughts, feelings and needs. Use the exercise below as an example if it is difficult to imagine talking about this. There is no right or wrong. You are entitled to your feelings, your thoughts, your preferences and your needs. If you have not had any discussion about this, then it may feel quite awkward. To introduce the conversation, you may say something like:
“I’ve been thinking about my feelings toward sex and want to talk with you. Is now a good time?”
Any sentence with the word “sex” in it has a good chance of grabbing your partner’s attention! IF they agree that now is a good time to talk, you can continue with the below. Some people like to write out and contemplate first what they are wanting to say. Some couples keep a journal. Feel free to do this if it helps you form your thoughts and clarify your feelings. If single, I encourage journaling of this sort to give you an opportunity to explore further your own thoughts and feelings in a non-judgmental space.
I feel__________________________________ when I think about sex.
i.e. “I feel confused and sad when I think about sex.”
i.e. “I wish I felt clearer, excited.”
i.e. “I miss wanting sex, how connected it used to make us.”
I still like (or appreciate)___________________.
i.e. “I still like and appreciate cuddling with you, your hugs, the way you look at me.”
If you could ____________________________, I’d feel__________________________.
i.e. “If you could continue to be patient with me, I’d feel less anxious and guilty.”
- For a free list of emotions, see the website cnvc.org . They give a list of feeling words to use when our needs are met and when they are not.
Watch the following:
- Jason Headley’s video on YouTube, “It’s Not About the Nail.”
- Mark Gungor’s video on YouTube “A Tale of Two Brains”.
Collaboration in the healing of our body is best done with a team. I had the listening ear of my Endocrinologist, Acupuncturist, Naturopath and Ob-gyn. Find your team. Once we can identify our goal as it relates to sex and sexual intimacy, we will know with whom to talk. The “fiery torch” feeling? My Ob-gyn. The lack of libido? My Naturopath and Acupuncturist. The intimacy issues? A couples’ therapist. Any hormone replacement I had, I cleared through my Endocrinologist. More times than I can count, I have wanted all of these professionals sitting around a table to discuss my care. In the absence of that, I formed my own team, apprising all of them of any changes made to my care. My Acupuncturist was there from the beginning of my symptoms, through diagnosis, an ovary removal, two hip replacements and transsphenoidal surgery. His focus was constantly two-fold: assisting my body in finding its own balance (while believing it wants that), and challenging me to challenge my perceptions and self-talk. He would say, “I can balance your body, but I am not in charge of your perceptions”. He assisted me in not allowing the disease to become my identity. He taught me greater self compassion by example. He challenged me when I would say, “I have Cushing’s”. He would say, “Do you? Be careful how closely you bring this to you”. He offered up instead that I was experiencing an imbalance that was treatable. It was not allowed to “move in” and become my identity. He also gently challenged me to consider masturbation if I couldn’t imagine sex. His justification? To gently remind the body what it is capable of, its natural birth right, and to gently nudge the hormones to remember this dance. He referred to this as “yoga” and told me my homework was to do my “yoga” 2-3 times a week. The comfort I found in being able to have candid conversations was priceless. I could say to him, “I don’t feel like it.” He would reply, with a slight smile and a raised eyebrow, “That’s not the point.” So, I encourage all of us to collaborate with providers that we trust, with whom we feel seen and heard accurately and who listen to us and allow us to be the experts of our own experience.
Define your goals as they relate to sex and intimacy. This will inform the collaborative team you choose. Do you want to want to have sex? No libido? Body image issues? Feeling disconnected with your partner and wanting to feel reconnected? Considering dating again? Vaginal atrophy? Unable to maintain an erection? Define goals and find a team.
Seek referrals. Ask your Endocrinologist, friends and family. Sometimes, word of mouth referrals feel the best.
Stay connected with other Cushing’s patients and survivors and the CSRF newsletter and website and through a support group.
In sum, Sex & Cushing’s is a complex topic. I have attempted to normalize the complexity of our feelings toward sex and experiences with sex while giving tips to continue the conversation and aid in our recovery and the reclamation of our full selves. Yes, this is a process that takes time, years in fact.
I encourage everyone’s feedback on this article, requests for further topics, conversations, information. Maybe in the future we can ask various components of our healing team to weigh in on these issues. In the meantime, with all the love I have, I invite everyone to continue to focus on the three C’s of sex: Self-Compassion, Communication and Collaboration.
My Best to you all as we continue this healing journey together,
Dawn Herring, LMFT, Cushing’s Survivor