THE BLOG
12/18/2013 06:03 pm ET | Updated Feb 17, 2014

There's No Crying for Cancer Caregivers

Crying was strictly forbidden after I was diagnosed with cancer. Almost immediately after I got the news, I made it crystal clear to my family that they were not to shed a tear -- at least not with me in the room. I asked them to seek out their own supports, identify people and places where they could comfortably and safely get the help they needed, and to not expect any consolation from me. I correctly predicted that I wouldn't be capable of answering their needs. Also, I just didn't want to see them cry.

It's been three years since my diagnosis, and I look back on this decision often. Was it harsh? Overly selfish? Could I have been more forgiving? My family and friends were just as shocked and scared as I was. Would it have been so terrible if I permitted them to express their fear, share their anxiety, or express their frustration? Would it have been so bad if they had cried in front of me?

In reflecting on these questions, three examples of when my one and only rule was broken come to mind. In these instances, "the cry" typically fell into one of three categories:

The 'I'm-so-sorry-you're-going-to-die' cry

One friend called me after I was diagnosed, in tears. I greeted her blubbering with a cheerful hello, but the line was silent. I went into consolation mode; I told her I was going to be ok. The doctors knew how to treat me, and we had no reason not to expect the absolute best outcome. She was inconsolable. Eventually, frustrated and confused, I ended the conversation.

The eerie tone of the call reminded me too much of similar conversations I had had with people after my father died. Although I didn't think I was worried about my own death (seriously -- I was too busy keeping up with all my medical appointments and trying to get diagnosed), I realized that deep down, I shared her fear. But that's exactly it -- it was my fear. Who could be more aggrieved over my apparently imminent death than me? And yet, I was calming and soothing her. If I could manage blind stoicism, then I would expect nothing less from my caregivers in return.

The 'I-know-what's-best-for-you' cry

Where the 'I'm-sorry-you're-going-to-die' cry comes from a place of submission and surrender, the 'I-know-what's-best-for-you' cry comes from a place of control and supervision. Keeping my family and friends close throughout my diagnosis and treatment meant I had support, but it also created a sense of shared ownership over a disease that was exclusively mine.

For example, midway through treatment, I began to notice that my appointments with my oncologist had become more like group discussions. I barely got a word in with my doctor (a.k.a. the key to my survival), and we had no one-on-one time. So I told my family that they were no longer permitted to ask my doctor questions at my appointments. They could still come, but we would discuss questions they had, beforehand. I would then decide for myself what could and could not be brought to my oncologist, allowing me to have total control over the conversation.

My mother was exasperated by my decision. She argued against it. A friend, she explained, diagnosed with stage IV breast cancer, still regretted not accepting her family's help years after her diagnosis. In drawing this comparison, I began to understand how my mom saw my decision. She believed I was pushing her away, further away from the crux of power (which was thankfully, in my hands). We were both afraid of losing control. Except, in this case, the situation was mine to be controlled. Help was mine to define. In that moment, my mother's tears trumped my needs, shutting me off from a caregiver who was critical to getting me with the help and care that I needed.

The 'my-needs-are-greater-than-yours' cry

When people cried in front of me, especially after I had asked them not to, they put me in a tough position. These are the people I love most in the world. I want to comfort them. I want to offer emotional support. But let me tell you, after a cancer diagnosis, those things aren't so easy to hand out.

Beyond the instances listed above, I would sometimes learn of a breakdown that happened outside of my earshot. About a sobbing phone call where a loved one asked in vain, "Why is this happening to me?" Or muffled tears shed in sympathy while I was getting a scan, or my first chemotherapy treatment. It was hard -- hard because I loved (and love!) these people. And I worried about them. How was my diagnosis impacting them? Were they coping well enough? Who was comforting them? But I had to push these concerns aside. My focus was needed on my own coping, comfort and emotional and physical well-being. Hearing secondhand about sobbing forced me to decide between my loved ones' needs and my own. And that was a frustrating, complicated decision to have to make.

I don't know who my caregivers sought support from. I don't know whose shoulder my friend cried on, or whom my mother vented to after our tense conversation. All I know is that they did, which is all I need to know. I got the support I needed from them, and they got the support they needed from others. That's the ideal patient-caregiver relationship. You trust that everyone's doing what they need to for their own best interest.

Let me be clear: crying was absolutely permitted before, during, and (long) after my diagnosis. I cried. My friends cried. My sisters cried. My mother cried. We all cried. We just didn't do it together. That's what helped me. When we were together, we built up collective resilience. We planned who to call, what to eat, and where to go next. Every minute my family and friends were with me, we all committed to getting me better. It's selfish, but only because that's what enduring cancer treatment demands of you. By putting my needs first, I was able to take ownership of and control over my experience. I was empowered to express my needs clearly and openly.

Three years later, that's where I am still. A little less crying, a lot less selfish, but still cancer-free. And -- I'm not too proud to admit -- just a little lonely at my follow-up appointments.