💜 Unacknowledged Losses
Unacknowledged losses are the parts of your life and relationship that illness or treatment takes from you that no one prepared you to lose. They may never appear in a medical record, and sometimes you do not even realize you are grieving them until enough of them have piled up that you look at your life and wonder how you got here.
Author's Note
This is one of those “standing naked in the sun” moments for me. I am writing about something painful, personal, and still unresolved. I am not writing this as an expert or as someone who has figured out what comes next. I am writing it as a wife who has spent the last two years trying to understand what prostate cancer treatment changed in my husband, in our marriage, and in me.
I also want to be clear about something before I go any further. I am not asking for advice about my marriage or recommendations about what I should do differently, how I should communicate, or what other forms of intimacy I should try. I have heard many of those suggestions. I am asking for the space to tell the truth about my experience, even when that truth is uncomfortable. Your experience may be very different from mine, and I respect that. This one is mine.
When Nasser was diagnosed with prostate cancer, we understood that treatment could change his body. We were told about fatigue, hot flashes, erectile dysfunction, and other possible side effects. We made the treatment decisions we thought gave him the best chance of treating his cancer. What I did not understand was how much of our life together could change along with his body.
Sometimes it has felt like a science fiction movie. The man I loved walked through the door of prostate cancer treatment, and the man who came out looked exactly like my husband and lived in my husband's body, but emotionally he often did not feel like the same man who went in. I know how stark that sounds, but that is how it has felt.
I have spent a great deal of time asking myself what I am actually angry about because anger can cover many other things. When I finally stopped trying to make my feelings more acceptable and looked directly at them, I found grief, disappointment, loneliness, fear, and a great deal of anger about what the end of our lives together has become.
I thought treatment would eventually end and caregiving would end with it. We would get through prostate cancer, his body would recover, and little by little we would return to our life. That is not what happened. The caregiving changed form. I am no longer managing radiation appointments, but I am still living with mood changes, memory problems, emotional withdrawal, irritability, and a relationship that takes much more work than it did before.
At times I do not even feel like a caregiver anymore. I feel almost like the custodian of our life together, the person making sure everything keeps functioning while also trying to keep our marriage from disappearing underneath all of it. That may be one of the hardest things for me to admit because it often feels as though I am the only one taking care of the relationship.
Marriage was never effortless before cancer. No marriage is. We argued, we annoyed each other, and we had good days and bad ones. There were times when one of us carried more than the other, but there was still a sense that both of us belonged to the relationship and both of us were responsible for it. I do not feel that in the same way now.
My birthday brought that home to me in a way I could not ignore. Nasser did nothing. Nothing. I was not waiting for an expensive present or some elaborate celebration. What hurt was that there was no acknowledgment of a day that once would have mattered between us. I felt invisible.
I can understand that cancer treatment may have changed him and still admit that living with some of those changes has hurt me. Understanding why something may be happening does not erase the effect it has on the person living beside it.
The sexual part of our marriage has forced me to face this more honestly than almost anything else.
For most of our marriage, I never thought very much about what sex did for us. It was simply part of being husband and wife. There were times we had sex because we wanted each other and times when it brought us back together after an argument. Sometimes it was comfort or reassurance. Sometimes it was just good to stop being serious for a while and enjoy each other.
Looking back, I can see that sex had become one of the ways we stayed connected. There were times when words had taken us as far as they could go, and somehow we could still find our way back to each other. I did not fully understand how much that had done inside our relationship until it was no longer there.
I can live without intercourse. What frightens me is realizing that one of the ways we built and repaired our bond is gone, and I do not know what replaces it.
People often say, “Find other ways to be intimate.” I understand why they say it, and I am not dismissing the importance of affection. Holding hands, hugging, talking, taking a walk, watching a movie together, or simply spending time together can all matter in a marriage.
What I struggle with is the idea that these things replace what was lost. I can hold hands with someone I love. I can hug a friend, take a walk with my sister, or sit on the couch and watch a movie with someone I care about. Those are meaningful forms of affection, companionship, and connection, and I would never say they do not matter.
But the sexual relationship I shared with my husband belonged only to the two of us. It carried a kind of closeness that was different from the affection and companionship I share with other people I love. When that disappeared, I did not experience it as though one form of intimacy had simply been exchanged for another.
Maybe that is part of what has been so difficult for me to explain. When someone tells a couple to “find other ways to be intimate,” it can sound as though there should be an equivalent waiting somewhere if they just look hard enough. I do not know that there is. I only know that, in our marriage, something was lost that holding hands or watching a movie together has not replaced.
When I began trying to understand why this loss affected me so deeply, I found research that put words around something I had understood only after living it. In Why Humans Have Sex, researchers Cindy M. Meston and David M. Buss asked people about their reasons for having sex. Among the many reasons they reported were expressing love and affection, feeling connected to a partner, strengthening an emotional bond, saying “I’m sorry,” saying “I’ve missed you,” lifting a partner’s spirits, and making up after a fight.
Reading that mattered to me because these were some of the very things I had been trying to describe. Sex had done more in our marriage than I realized while we still had it. It had been physical, but it had also been one of the ways we communicated, reconnected, reassured each other, and sometimes found our way back after things between us had gone wrong.
The research involved primarily younger people, including a large sample of college students, and I am not suggesting their experiences tell us what every older married couple experiences after prostate cancer. I include it because it helped me understand that what I was grieving was not simply intercourse. I was grieving something that had carried emotional meaning in our marriage for many years.
The Research
Cindy M. Meston and David M. Buss, Why Humans Have Sex, Archives of Sexual Behavior, Volume 36, 2007, pages 477–507.
What bothers me about the usual conversation around sexual changes after prostate cancer is how quickly it becomes a discussion about erections, medications, injections, pumps, implants, libido, or whether intercourse is still possible. Those things matter, but they are not the whole loss.
If sex had become one of the ways two people found each other again after an argument, expressed affection without words, or felt wanted by each other, its disappearance leaves more than a physical absence. In our marriage, it happened at the same time that communication became harder, affection changed, anger became more common, memory became an issue, and emotional withdrawal entered our everyday life.
We lost one of the ways we had always known how to find each other at exactly the time when finding each other became much harder.
When I finally allowed myself to look directly at what I was grieving, I realized that I was not only grieving sex. I was grieving the person with whom I had shared that part of my life.
I miss being wanted by my husband. I miss the way affection once happened without having to think about it. I miss the man who noticed me. I miss being able to repair something between us without every problem becoming a conversation that seems harder than it used to be. I miss the sense that there was something between us that belonged only to us.
That is the part I had not understood when I first thought about the loss of our sexual relationship. I know a marriage can continue without intercourse. What is much harder for me is wondering whether the man I shared that marriage with will ever fully return to me. Some parts of Nasser are still here, and sometimes I see glimpses of what we had before cancer. Other parts feel very far away.
So when I say I am grieving the loss of sex, I am talking about something much larger. I am grieving parts of the person, parts of our marriage, and parts of the life I thought we would still be sharing at this age.
I am also angry at the medical system, and I need to be honest about that. I am not angry that my husband was treated for cancer. We were treating cancer, and I am grateful that treatment was available. I also understand that no doctor could have predicted exactly what would happen to Nasser or to us.
What I am angry about is how little preparation there was for what those medical side effects might mean once we went home and tried to continue being husband and wife.
We heard words like erectile dysfunction, mood changes, fatigue, and cognitive changes. I understood what those words meant medically. What I did not understand was what they could mean inside our home. Erectile dysfunction did not tell me that we might lose a form of connection that had been part of our marriage for decades. Mood changes did not prepare me for what it would be like to live with irritability and emotional distance. Fatigue did not tell me what might happen to the plans we had made for retirement. Cognitive changes did not prepare me for repeating myself, arguing over what had been said, or wondering whether something had been forgotten because of treatment, aging, depression, ADHD, or something else entirely.
I do not expect that anyone could have predicted exactly what would happen to Nasser or to us. I wish someone had simply told us that these side effects could reach beyond his body and affect our relationship too.
Maybe we still would have made every treatment decision exactly the same way. I believe we probably would have because we were treating cancer. Being prepared for a possible consequence, though, is very different from being discouraged from treatment. I wish we had understood that some of the hardest effects might not become clear until we were back home trying to live our life together.
I was 69 when prostate cancer entered this part of our lives. I am 71 now. Nasser and I were looking toward retirement and thinking about having more freedom. We talked about traveling and deciding how we wanted to spend the years ahead of us. I thought we had reached the part of our lives when some things would finally become easier.
Instead, everything seems harder, and that is one of the losses I have struggled most to accept. I am not only looking back at what changed between us. I am looking ahead at a future that may be very different from the one I thought we were going to share.