Coming Out With Cancer

A New Coming Out Story

Cancer’s lessons about intimacy

Emotional intimacy is weird when you have cancer. I wish there was a more proper or academic word for it, but “weird” just seems to be the best word that I can find. We spend an enormous part of our lives navigating intimacy with others. We decide what we can and can’t share with people. We search for the right time or the right environment. We associate emotional intimacy as something that’s only reserved for a few special relationships. As we grow, we find that our capacity to share intimate feelings and thoughts with others is a big part of our “coming out” story. We learn that emotional intimacy can exist in both our friendships and our romantic relationships. We also decide whether or not emotional intimacy and sexual intimacy can coexist in our lives. It’s an experiment that is a constant push/pull on our self-esteem and self-concepts. We practice this to form relationships. Our emotional connection with others is how we are able to create families when biological families are no longer what we hoped.

And then cancer comes along and you find yourself living a new “coming out” story.

From the beginning of our cancer experience, we feel an overwhelming awareness about our need for connection and intimacy. Everything we thought we knew about our personal boundaries/friendships/romantic relationships/families is now called into question. We become protective of who we let see our vulnerabilities and we become open to sharing our experience. All of the decisions we established regarding what we tell people and when we tell them, are challenged because cancer changes the rules. It becomes our next identity/intimacy crisis so-to-speak. We want to isolate as much as we want to be around people. We feel a connection to the larger cancer community and we feel like a faceless name in a crowd.


I remember feeling so hurt when a close friend wouldn’t come around at all. After telling me that she wanted to be around and be supportive, I had months of no contact with her. It hurt so badly at the time, but I realized that some people just don’t have the capacity to handle even being around us when we are sick. It’s not because they don’t love us. They just don’t know what to say. Instead of acknowledging that they are uncomfortable and don’t know how to interact with us. They just don’t say anything.

Last year my cousin’s husband had a recurrence of throat cancer. Jon was in his 30’s, very healthy, no history of smoking or drinking, no family history and no HPV. It was a bizarre and aggressive cancer. After spending a few months overseas for final treatments, he and my cousin decided to come home and cease treatment. We set him up to receive hospice care at home. Over the next two weeks, my cousin and I (with the help of all of our mom’s) took shifts each day and night to be with Jon as he began to pass away. I remember asking my cousin whether or not she was surprised by the people that didn’t show up to visit with Jon (and us) during our last weeks with him. She said that this experience has taught her to not be hurt by people’s absence. She had hoped that some of them would come to be with Jon but some people just don’t have the ability to reconcile what was happening or the capacity to understand that we were all at peace. She followed that with, “I just know that they love us and we love them. We just don’t have the time to help teach them new skills and we can be thankful that they get to have only good memories of Jon because this is traumatic no matter who you are.” I learned so much from my cousin during this experience. She’s so good at loving people and cutting people slack.

I sometimes refer to my experience with ovarian cancer (age 31) and subsequent preventative mastectomy with breast reconstruction (age 34 – 36) as 5 years of my life where I failed some tests and passed others. If we just look at the quality of my relationships, then technically, I didn’t learn my lesson until I was 34. I spent the first two years pushing people away and the last three years investing in the people around me. Jon was diagnosed shortly after my breast reconstruction began. He taught me a lot about living with cancer. I didn’t have the battle one usually has with ovarian cancer. I don’t have any explanation for why or how we caught it so quickly. I think I had some survivor’s guilt when he first got his diagnosis that was hard for me to reconcile. My experience was more of an interpersonal one over the 5 years. I wrecked a relationship in the first one, and started one in the second. Neither were parts of my “plan.” Which only means that I’ve spent a lot of time thinking about the way we experience intimacy, establish boundaries, and how cancer changes the way we connect with others. Okay, so maybe what I meant to say is that I’ve spent a lot of time learning from my mistakes and bad decisions.


After living through my experience and Jon’s, I now see that the change that cancer has on our definition of intimacy begins in the questions we ask ourselves from the moment we think we might hear our doctor say the “c” word. On the surface, the questions in our heads don’t seem like they represent a crisis of identity or capacity for intimacy. If you look at them carefully, you see that a lot of our questions relate to the strength of our relationships, the amount of trust we have in the relationship, and the boundaries that we set for them.


When do I tell my friends? Do I tell my parents now or is it too soon? I havent talked to (insert name) since they told me they couldnt be in my life. Do I need to call and tell them about this? What is my partner going to think when I dont have boobs? Do I get a power of attorney now or is it too early? How do I talk about what I want and need when it might hurt their feelings? How do I say how I feel right now when I dont know what I feel? How do I apologize for being angry and lashing out when I just did it because I dont want someone to help me get out of the shower but I know I cant do it by myself? Why are all of these people around me saying they support me when all Im doing is spending time consoling them? How do I ask if my drains are showing in this shirt without getting my feelings hurt because I just want to hear that I look pretty?


You get my point.


Sometimes we feel like we are starting over in our relationships because of the nature of our conversations surrounding our illness, treatments, decisions, etc. Before cancer, emotional intimacy could have occurred only after we’ve shared our darkest secrets or known each other for more than five years. We might have seen it as a “nice to have but not necessary” and confined it to a single person or something that we can never truly be vulnerable enough to experience. Then we find that cancer forces us to begin to experience intimacy as something that we need in multiple shapes and forms. We see that it is much more fluid that we realized. It becomes less about constant contact and historical knowledge and more about connection and mindfulness. We begin to see that a conversation with another patient covers topics that we used to consider taboo with a stranger. We get so good at describing our scars or lack of bowel movements that we don’t even realize that talking about these things used to be reserved only for our closest relationships. We quickly develop a way to communicate without words with our closest caretakers.


Although romantic emotional intimacy is a big topic for us during and after our experience, I point to examples in our other types of relationships to illustrate the fluid nature of emotional intimacy when cancer impacts our lives. We learn that emotional intimacy is about moments of time where we connect with the people around us in a way that is exactly what we need in the moment. It’s about changing our rules around topics that used to be “taboo” or too personal. It’s about not resisting vulnerability. It’s about being deliberate in our interactions so that we can be aware of the other person as much as we are of ourselves. It’s about being able to articulate our feelings in the moment.


At the moment that I caught myself talking about boobs as if they were accessories, I knew this change had happened for me. I spent 4 weeks at home before returning to work. I began getting “fills” every other week. I used to call it “getting my tires filled.” Basically, you get saline solution pushed through a port in your boobs and once you get however big you are going to be, then you get implants. (Science is pretty cool, huh?!) It takes some people (like me) 4-7 months before you get implants. After 4 weeks at home, I was pretty used to talking about the breast reconstruction process and my crazy flat chest. So when I got a “fill” that basically took me from an A cup to a C cup in about 5 minutes, I had to call my boss and tell him that I was in so much pain that I couldn’t even fake working and needed a couple days off. It dawned on me as I said, “I can’t move my arms. I just went from an A cup to a…” And this was the moment I realized that I started changing my boundaries. Prior to the mastectomy, I would never – even in my drunkest happy hours – have talked to my boss about my boobs. Suddenly it just felt so normal that I didn’t even stop to question if I was crossing a line.


Afterwards, our relationship changed so much. I realized that the comfortable way I described my experience to him, helped him feel more comfortable acknowledging what I was going through. Transparency about my situation took the awkwardness out of talking to someone about my boob issue. Just to be clear, I was not so transparent that I showed him my scars. Just transparent enough to explain the crisis I was in at the moment. (Although, that’s just because I think I would’ve been fired for being inappropriate if I had offered to show him my scars. I have shown a lot of other people my scars. Scars are cool but assessing my audience is a better life-decision.)


I actually began to realize shortly after my open conversation with my boss, that speaking openly about breast reconstruction helped me manage my relationships better. I could tell by the way someone changed body posture or how they asked certain questions whether or not they wanted real details or just generic responses. Sometimes I was relieved to know that generic responses were all they wanted. It helped me to see that showing everyone a measure of grace helped me feel better about my relationships than if I walked away hurt or feeling marginalized. I knew how to spot the person that truly cared and wanted to be part of my life. I knew how to spot those that were too uncomfortable to even ask me how I was feeling. I had peace about both. I also figured out that if I was open about what things really feel like, others would also open up.


Many people would ask me about things and I would be surprised at how open they were about family members that had similar experiences. People that were acquaintances surprised me by their empathy and openness. This doesn’t mean that we necessarily sit and talk for hours about our lives. Sometimes a “knowing look” or a surprise cold washcloth on my forehead served as a display of intimacy and connection. It doesn’t take long after you connect with someone to realize that the person you’re talking to is someone with no support system and feels isolated. Or the person on the other side of you has a supportive spouse that is doing too much and they feel smothered. An online support group helps you learn that your situation is similar to someone else’s. Of course, sometimes, we just need someone to not talk to us about our situation but tell us stories of their busy lives or the latest reality show that is so scandalous. All of which are ways that we experience a form of emotional intimacy.


There’s another side of intimacy that cancer forces us to face. We begin to see relationships as a way to give and receive energy. We gauge interactions on the amount of energy it takes to be around another person. Energy to take ourselves to the bathroom can sometimes be as hard as walking through the grocery store. Recognizing people that zap our energy becomes a super power. We find ourselves telling people that we are “fine” just so we don’t have to go through every detail because it’s exhausting. We seek out certain people because we feel energized after talking to them. Unfortunately, we also have people back off and not be part of our support team. We also find ourselves choosing to not invest in a relationship that seems to take more energy than it brings. We find some of our relationships even surprise us.  Once we figure out how to manage our energy, our relationships strengthen, even with those that back away.


There’s not a lot of research focused on whether or not people that identify as LGBT have different needs when it comes to emotional intimacy. I would be willing to bet that this is because the need for emotional intimacy is a human condition. With that said, here are a few things that I know. I know that finding ways to connect with others is important for a cancer patient’s survival. I know that being mindful about our emotional connections with others is necessary to our life during and after cancer. I know that sometimes a “knowing look” or “fist bump” is a sign of emotional intimacy and can feel so comforting. I know that when we share how we feel and live in the moment, we become better at navigating our relationships. And I know that when you have cancer, emotional intimacy is weird…really, everything is weird.