Ambiguous Loss – Sexuality after Breast Cancer Diagnosis

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Heads up: sexual discussion may be uncomfortable for a few readers. But there’s nothing erotically or sexually described herein.

Ambiguous Loss

I think the concept of ambiguous loss relates to the cancer experience so eloquently. As I drive home from an oncologist appointment about three hours away, I’m listening to the podcast, Onbeing, hosted by the insightful and intellectually acute Krista Tippett. In this episode, she’s interviewing Esther Parell regarding her philosophical wisdom relating to eroticism.

As I listen I pause. I paused when she touched on a concept that reached deep into my heart. Ambiguous loss is a concept describing exactly what women and probably men experience after a diagnosis of an illness that may destroy our own self image as sexual beings.

Our sexuality disappears in the mirror and thus in our minds. However with some love, gentleness, and patience, it can re-emerge sensually and even erotically. After all, sexuality primarily is a function of the human brain. Eroticism begins with, “hello.” Hearing the voice of the contained other through the release of breath.

Healing and Loss

All parts of our healing and for some, recovery, needn’t stretch on forever. Sometimes couples can elevate their love for one another to a higher spiritual plane. That’s when we can drop our guarded egos. There are times when instead of sexual connections we rely on trust, intellectual compatibility, friendship and compassion – those emotions and psychological constructs – to re-construct the relationship’s foundation.

We help create a safe space for our partner whose physical and emotional trauma need patience and acceptance. Both partners give what they define as love to each other. They come back together as who they both are after a terminal or life threatening diagnosis effects the partnership. It changes everything and our relationships to everyone in our lives. Sometimes the threat of losing a person draws you closer.

The connection and the love strengthens rather than dissipates. Clearly when the reality of our mortality faces us, we never expected it to melt into the floor like the wicked witch from the Wizard of Oz. Like so many things do we’re whisked off into a world we don’t recognize as home anymore. We find friends who we’d never had met had we not been turned asunder like in the tornado that took Dorothy away to some strange and dangerous world.

In some relationships contains built up resentment, and kindness catapults us over feelings of “unfairness”. Distance can widen between two committed people when the partner who faces an illness feels terrible about what’s happening to them physically and without any personal control. We can become an anchor that can either steady or sink the ship. We can run ourselves aground without even checking in with our partners on their internal weather reports. Don’t just assume you’ll become “too much” to deal with; neither should we feel we have “put upon” family, friends, or our partners. Perhaps in some instances we might be right. More likely and without inquiring, we are off in our assumptions.

Grieving our Bodies

We run the gamut of grieving for ourselves- anger to acceptance- sometimes for a short period of time especially where we find love and acceptance rather than rejection. Yet our grieving can linger on for what may seem an eternity to either mate.

If we lose a part of our bodies, for women specifically our breasts and or our hair, we lose a part of our physical identity. Once transformed by surgery or chemistry or radiation, one may find it difficult to redefine themselves and never see themselves as we once were: ranging from whole and unique to the exterior world in view to the deeper degrees of intimacy with a committed partner.

After a double mastectomy, even with reconstruction, our bodies are no longer our own. There’s an amputation of physical self and our identity – even for some of us the loss of our hair brings about a mourning of self-definition. This ambiguous grief may not seem like a big deal to someone who’d not known the truth of a disease taking pieces and parts away, stripping us down to the bone on which we must find the energy and courage to rebuild a new self.

The very nature of how we “look” comes into question.

The seemingly innocent comment meant to compliment us, “you look great,” really can come across as trite and sometimes very painful. Of course the subtext, “for someone with cancer,” is painful and unstated. The truth of our awareness that we can never be same physically leaves us feeling less attractive and less confident.

We experience loss on so very many levels. The losses stack up over the course of time and the compounding of fear. Losses friendship, family, intimate relationships, careers, financial status. But there’s also a very ambiguous loss that exists in our hearts.

What’s so difficult to put into words?

How we are touched both emotionally and physically by those intimate with us and even by those who are merely acquainted with us?

In some cultures you need to ask permission to touch someone else. South Americans like to talk in close proximity to each other. North Americans, and others, may see this as an invasion of personal space. An abrupt gesture towards a hug may seriously violate our personal space. In Thailand it is considered rude to cross your legs in company and to point your toes at another person. The feet, as the lowest part of the body, are given the lowest esteem and pointing a toe is demeaning to the person at whom the foot is pointed. In German business dealings, moving your chair closer to the host is considered an insult. In most Arab countries, it is considered polite and a sign of friendship for males to hold hands when walking.*

* https://gcaptain.com/culture-clash/

Differences in cultural norms impact our sexuality and can take on serious undertones of implied attraction.

Does this dress make me look sexy?

Another consideration for women who have either been forced into menopause by chemical or surgical reasons may even have less interest in looking more attractive. I can relate to this on some level. I’m not really feeling all that great about how my looks have changed since my diagnosis and subsequent treatments that put me into a form of chemical female castration. Furthermore, science backed evidence points to the closer women were to ovulation, “the more provocatively they dress and the more attractive they are rated.” (https://www.sciencedirect.com/science/article/abs/pii/S0018506X06002509?via%3Dihub) So there’s truth to how we feel about trying to look sexy for our partners and this holds true for women of all sexual orientations.

Obviously none of us have lived the same lives or walked in another persons shoes. Likely can we even remember everything that’s influenced our sexuality. No matter how well paired humans can seem, even in platonic relationships, there’s a compassion I believe that allows for acceptance of our beautiful differences. We do not know the entire truth behind someone who’s endured childhood trauma, for example. But we can empathize and accept the consequences of trauma. We can even give that person the security of a trusting relationship to help heal some of those wounds.

But the ambiguity of loss really tears at us when, at times my husband or I don’t feel very good about ourselves for reasons of depression in his case and cancer in my own.

How I feel and how I am Perceived

When I don’t feel attractive, I don’t feel very touchable. I’m afraid that I will turn him away from me physically if he “sees” me the way I feel about myself. Although he says I am beautiful, and I believe in his heart he truly does find me beautiful both inside and outside, still in my current persona, I cannot feel like a person I would want to touch with sexual or even intimate gentle intent.

And that’s a very ambiguous statement especially coming from my side of the bed. That’s where a woman with terminal cancer lay, specifically breast cancer, and on the other side of the bed where a husband is wondering if it’s OK to even touch her. Will it hurt? Will she ever become available to me caressing her? And then I think will you be available to me? I often wonder if he still wants to touch my diseased body? Do I disgust him?

I can’t imagine what it’s like to have to wonder if the part of you that makes you masculine is akin to what it’s like to watch somebody go through the dismantling of their body. Extraction of what makes them female or male creates ambiguous loss of our identity.

That is where the ambiguity of the gap between how I feel about myself on a daily basis exists between that which is seen and how I believe am perceived by others.

Many days I feel wonderful about myself. I put on make up and a dress, although I may just be staying home, and it feels good just to see my womanly side again. Theres a strong sense of my femininity I carry with me, along with my charismatic self. I’m an “ambivert” – extroverted with a great need for my own quiet, personal time. Both men and women once looked at me as a human being who was attractive. I’ve never really considered myself as particularly attractive.

These twin parts of my personality I’m sure present a very difficult person to be in a relationship with; generally I can go with the flow. Yet I’m sure my empathic nurturing side might feel suffocating, too. Especially to men who really mean it when they say, “nothing,” when asked what they’re thinking about or answer, “fine,” when asked if everything’s okay.

Avoidance isn’t the answer

And I think herein lies where the ambiguity that can create turmoil leading to arguments and feelings of anger and avoidance. How much more can we add to an already difficult to navigate terrain? Looking back at how I see myself, cancer added one more layer of ambiguity to my partner coming closer to me. If I haven’t a clue where my path leads, how can I expect anyone else to live up to the same task?

My husband and I used to go into shops together and were stopped and asked, “have I seen you before? Have you been on television or in a movie?” Very nice to be noticed.

We look very similar in a lot of ways both tall and thin with my shock of platinum and his shining silver hair along with his striking aqua blue eyes and aquiline nose. We’re both very fair skinned and have a penchant of high style clothing… Sometimes we’d be mistaken for sister and brother.

When we first started dating, we equally felt the kind of recognition in the other person we’d been waiting our entire lives. At the time we’d lost hope in our search for an equal. Our first date started the night I picked him up at his place and lasted indefinitely. Until cancer. Until depression. Until our world was torn asunder. It’s very sad for us both to see the other suffer. So how’s it possible to find a way back to each other physically when emotional roadblocks were constructed by our individual challenges?

About two months after we’d started seeing each other, we attending a party for Apple engineers. I was one of the only women there and so of course there was a lot of head turning and a lot of looking at my now husband, and questioning, “how did he get to be with her?”

But they didn’t know things about him I do. For instance they didn’t know his eroticism, is soft touch, his sense of humor, our intimate connection of intellectual yet ambiguous compatibility. And most of all our deep trust; trust should never be ambiguous. In fact, in my construct of how solid partnerships should be, it is the bedrock on which any relationship is built. For me in every relationship there is no ambiguity to trust. Of course in a long term committed relationship sexual trust, “he’s not going to cheat on me.” What I mean is trust that he will touch me as I want touched, he will ask her what he needs from me, and that he will trust that I will never forget to ask over time because needs change.

Rejection and Trust

It’s not rejection that makes us distrust or sexual partners. And in that space we are all ambiguous. Nobody wants the same thing the other person wants and so we need to be open to what our partner needs. Desire can make relationships exciting and lasting and lead to a comfortably monogamous relationship. But sometimes one rejection of somebody’s desires can lead to a devastating domino effect.

Tip one or more, or for some of us all of the possible emotional and physical difficulties over, and the relationship that took months, years, and even decades can come falling down. Embarrassment, lack of sexual energy, impotency, body disfigurement, pain of all sorts, fatigue, and all the side effects of the therapies meant to save or prolong our lives dampen our ability for sex, sometimes dousing our internal fires completely.

None of this must work out for the worst. 50% of marriages where the woman has terminal cancer end in divorce filed by the husband. In the other case it’s in the low single digits. Men for the most part are not brought up to be natural caregivers. Women are expected to be. http://www.cnn.com/2001/HEALTH/05/14/cancer.divorce/

With breast cancer we creep back into our sexuality in a new way. And that new way has to be accepted by our partner. They have to go slower and more gently us and ask us is this OK? I hope that that felt good? We cannot become objectified to relieve tension of their own. Sex has with it so many facets and when it’s shining brightly and I get what want it’s not it’s just like a stone outside on the side of the road that dully blends with everything else that there is and isn’t. It’s a sparkling gemstone discovered inside the ore of a mine, there to be discovered.

In some ways we are like dense beautiful forests, there to be explored on defined paths as well as through dangerous dark places. We discover more interesting ways to get from one side to the other side and the same thing goes for once we have part of us taken away in the case of breasts. It is a true amputation – very violent surgeries. It may not be as noticeable to others but when we look at the mirror we don’t feel as good about ourselves any longer. And when you don’t feel good about yourself you don’t necessarily feel very sexy.

So our husbands and partners must patiently wait in that ambiguous space until we know what feels good, and equally as important what does not feel good. For some we may not be able to have intercourse for a long while after medication or surgery that takes our hormones that make us men and women: estrogen and progesterone for the feminine attributes when hormone castrations forcing us into menopause are ceased by medications and for men with prostate cancers, testosterone in much the same way and by surgery in removal of the prostate itself.

And that’s where the ambiguity really starts to come into our relationships. And play is a place we can start trying again.

Play meaning holding hands and going for a walk together play meaning lying closely in bed and just stroking the other person feels good and even just touching their hair lightly stroking the neck, giving a soft soothing massage, running someone a nice warm bath. Touching them just how they need it. It’s especially important for trust to rebuild for who has been altered and the person who has not been altered.

It’s ambiguous for a partner to know does my lover still want me? Does she still want sex with me? Sometimes it’s very painful for women who are lacking estrogen for reasons of menopause to have sex. I have experience that pain and I’ve come up with a remedy of a small dab of topical loidocaine. If you’re having difficulty with painful intercourses, it’s something you might try. It saved my ability to even tolerate penetration.

But that being said eroticism is not only sex. We have to be touched and loved and cared for before we can even think about having intercourse. I enjoyed sex before I was diagnosed and my body robbed of the chemistry that made it so enjoyable. But I’ve changed since then.

Emotional change of clothes

There’s no doubt that I have absolutely changed. I am not the same sexual being I was almost seven years ago. And there’s a ton of guilt that goes along with it, both emotionally and spiritually. And deep end in my heart of hearts I know this will mean that I’m forever cut off from certain things in the world, cut off from some of the things that I really enjoyed before. There’s mourning and grief that comes along with loss of sexuality.

It’s ambiguous as to whether we will ever get it back. We hope but it will never be the same. I know I’ll never have the same kind of sex I once desired but hopefully there will be some construct of what it once was someday. I don’t think that’s going to happen. My husband thinks I don’t want him and I think the same. I’ve offered to go to counseling which he’s declined.

I don’t know what to do about it anymore but I suspect it’s something we will need to explore but in a different way than we once could. What I want him to know is how I’m feeling and how I feel about myself as a sexual being after diagnosis.

Do you sleep in separate rooms-or together ? How rich and satisfying of life can it lead to if you do sleep separately? Sleeping alone to me it’s not something I can choose as an option. In fact I miss my husband even when I’m angry enough to sleep on the couch. I feel loss honestly without him when I need to stay in a hotel, I do miss him. I miss the sound of his breathing and I miss his warmth. I used to be the kind of person who enjoyed being woken up in the middle of the night for some intimate time. But no longer because my sleep is sorely needed to restore my body from chemotherapy, radiation, and from surgery. I also am open questions like, honey did I hurt you? You did not hurt me. My port is pretty solid and I’m glad for that. But he doesn’t know to ask if he’s hurting me in other ways. If he’s hurting me why not a hug. Right now he’s hurting me right now by coming to bed so late and I can’t wait longer to rise for a long enough to be available for him.

Don’t give up on me, baby

Just because parts of our bodies have stopped responding because certain chemicals stopped flowing in our blood streams, does not mean that we have to stop trying to find out what the other person wants; or how they feel comfortable with themselves as sexual beings.

And souls reach one another on different planes when we can elevate our love to a spiritual sensuality rather than just raw sexuality. That would be engendering of more love, and don’t we all need that.

We don’t have to break it off. And instead of finishing the book of your love, you could begin a new chapter in your relationship and look at the changes as beautiful and in a caring way not ugly and rejected leading to a painful outcome for both partners.

Love to you all.

4 comments on “Ambiguous Loss – Sexuality after Breast Cancer Diagnosis”

    1. Absolutely and thank you for continuing to support my work as I will do what I can to do the same in kind. I can reblog it to mine.

      1. During the 10 years after diagnosis and treatment of Linda’s cancer I was frantic to collect all my thoughts and observations about Caregiving. In the time since then I’ve had to adjust my “obsession” because it was not promoting well-being for us.

        I truly appreciate you devoting time and energy to answer the survey questions. Plus the fact that your answers are identical to mine tells me that it wasn’t my imagination – something is broken!

        I don’t know what to fix but I do know not to be quiet.

        Thank you Ilene!

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