A dear friend also living with Stage IV Metastatic Breast Cancer (MBC) posted a comment on social media the other day about feeling unseen and unheard by people around her, including family members. The examples she gave were experiences many of us living with MBC have with healthy people as we navigate this living while dying thing. As so many people responded to her post, it was very clear that this struggle is bothering a lot of us.
I started thinking about what I’ve done the last four (4) years at different times to deal with these feelings that can be extremely intense and how similar my own experiences have been. To feel as though you are not worth the time or effort to others is a really awful feeling and isn’t one that I’d had very much prior to MBC. It is so perplexing and maddening to be at the point of needing the most help, the most understanding, the most grace and to be treated the worst. I’ve tried to organize some thoughts about my experiences below.
First of all, I’ve chosen to be very open and up front about my illness and what I deal with. From social media to blogging to reminding people I’m around, I try to never miss an opportunity to educate others about what living with MBC is really like. Since so many of us don’t “look sick,” I find that it takes some reminders about what we carry daily. Perhaps with this information, communication from people around us may adjust. Recently, as I went through progression and struggled with the adjustment to my meds, I had to take a step back on some volunteer projects at my kiddos’ school. There was no judgment or complaining and so many moms stepped in to cover my commitments. Thankful for all of them! This experience, though, hasn’t been the norm overall when dealing with organizations and people outside of the MBC community. As I’ve said to those who are inflexible and behave badly, I’m way too old and way too sick to tolerate certain behaviors.
Secondly, I watch carefully for those who actually want to know the details. If I share a little bit and the person/people I’m with rolls their eyes or changes the subject or withdraws, I know that that person isn’t someone who wants to know about my experiences. Observing that someone you had thought cared about you unwilling or unable to actually lean in can be really devastating. I’ve experienced friends and family members who just can’t handle what I carry every day. As hard and as sad as it is, those relationships have to be placed at the bottom of my list of priorities. Such a disappointing and painful experience, especially when the same person who avoided their opportunity to actually show some support not only didn’t show an ounce of remorse but attempted to gaslight me when I answered questions about why I didn’t share my struggles.
Third, I work really hard to remind myself that all struggles/feelings are valid to the person talking. Yes, I spoke up with the person who was checking me into the infusion center to get my Zometa infusion when she complained about her back hurting. I told her that complaining about a pulled muscle wasn’t appropriate when interacting with patients who have cancer, especially terminal cancer. But when my mom struggles with pain due to the stenosis in her back or there are other people in my life with injuries, I can empathize with them. I can put myself in their shoes and find some compassion, especially for those people who show compassion to me, to a point. I’ve often had to say to some that I’m just the wrong person to be complaining to and that usually does the trick.
Fourth, the longer I’ve lived with MBC, the more I’ve found that spending time with people who are also living with the same disease is important. Explanations aren’t necessary and adjustments are given freely. I think about how someone I know demanded an apology for wasting their time when I got mixed up about a time zone difference (the same person also openly mocks our covid safety efforts to others). Giving grace and understanding that I just don’t have the same capacity now wasn’t an option for this person. Others in the MBC community respond very differently and grace is the default. These are the people I want to be spending time with, these are the people of character who enrich my life and the lives of those around them.
Fifth, a little gratitude goes a long way. I’ve spent my life and career as an advocate and caring for others. Even when I’m struggling or am not at 100%, I often am still meeting with and advising others with MBC. Those in the MBC community typically respond with gratitude because they know how much of an effort it takes to show up. Others outside of the MBC community who have been the recipient of my efforts for decades often don’t value that help and support. I’ve never expected reciprocation from those I’ve helped and yet I’m still blindsided when there is no gratitude and zero reciprocation when I could use some extra hands.
The bottom line for me is that the experience of being unseen and unheard can flatten the most hardy of souls. It’s often difficult not to internalize the message of worthlessness from others, especially when those people used to be someone close. The pain and scarring of some wounds are deep and take a long time to heal, if ever.
Stay tuned for Part II, in which I will explore how I feel seen and heard by those occupying my space and my life.