Unseen and Unheard, Part I

General 4 Minutes

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.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

33 thoughts on “Unseen and Unheard, Part I”

  2. thank you for this thoughtful post, sad and disconcerting as it may be. Honestly I thought the lack of communication with some of my friends was due to covid and restrictions but now you’ve made me think. Is it my diagnosis for some of them? Indeed something to consider. Hugs to you Abigail. Can’t wait to see Part II. ❤

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  3. You are such a wonderful teacher!! I understand sooo much from what your experiences are!! We used to get sad when Bethany just wanted to not get text messages when she would tell us the results of her tests. She was just tired of MBC!!! And tired of explaining and just plain TIRED❤️❤️❤️🦋🦋

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  6. Nailed it! The thing with some of us is we are Type A personalities. We are used to leading and helping others. We aren’t inclined to ask for help/compassion/grace, so when we find the strength to let our guard down in hopes of finding that help or compassion, and it’s met with indifference or worse, it hurts even more.

    I’ve learned that unless people have experienced some things, they often don’t even have the ability to. They have no frame of reference to understand, and I hope they never do. It certainly doesn’t change the effect on us, though.

    The fact that they truly can’t understand is of little consolation when we are the recipient of their ignorance and/or negativity.

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    1. And you nailed it too! During our recent struggle as a family with me going through progression and my mom struggling with the loss of her mother from COVID, the people who responded to the meal train were mostly people like you. People who don’t have much of a margin, but who reached out anyway. Now there were some exceptions, but I’m amazed and how often this happens. Attempting to adjust my expectations so that I’m not let down so much every single time; it’s a work in progress. Thank you, my friend, for your continued understanding and support. 🙂

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  7. Pingback: Unseen and Unheard, Part II – No Half Measures

  8. Abigail, as you know, I have not got MBC but have been left in an bad way by cancer. So I am not in your shoes, but my heart goes out to you. Even in my very different position I have experienced all the things that you mention. It feels devastating often, or at least it did to me and still does. I too react to people who say something about their own much more minor health problems, in the same way as you do. I don’t know what to say other than to reach out to you in love and support. I am so sorry you have gone through this. I hope that hugs are acceptable.

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    1. Hugs are always acceptable! I am consistently amazed at how those with all stages of cancer feel very similarly. It doesn’t take a terminal diagnosis to find yourself in such a different category and to feel sidelined. Appreciate you reading and commenting!! ❤️ and hugs to you.

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  9. Dear Abigail, I have begun to write a response to your posts so many times…but then I don’t do it. I type your name and the first few words on my heart and then I stop. I am moved by what you write and by the courage of your transparency, in the midst of your pain. I have learned so much from what you share and you have sharpened my awareness and sensitivity, both as a healthcare provider and as a friend to those I love that are “living while dying.” Why have I not responded? I guess because I am afraid. I’m afraid of saying the “wrong thing” or saying “something insensitive” or afraid that I don’t have the right to comment when my struggles indeed pale in comparison. However, as I thought about the title of your blog “Unseen and Unheard”, I realized that my lack of response, for whatever rationale, may be contributing to feelings of being “Unseen and Unheard.” I can’t begin to know the realities of living while dying, altho you have given me a window into your journey and I am grateful. I don’t have much to offer in a tangible sense but I am listening. I am learning. I am reading and absorbing what you share. I am praying for you and your family. My heart breaks for the difficulty of your journey. Eleven years ago, you were an unfailing advocate, counselor, and support to me, in some of the darkest hours of my life and I am forever grateful. Thank you for sharing your journey and the realities of your life with MBC.

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    1. Your comment got caught up in my spam folder, so I am sorry for the delay in responding. Your comments really do mean so much to me. And yes, it is usually better to say something, to say, I’m thinking about you, praying for you, that something resonates in your own life, etc. I’m so thankful to have been a small part of helping to sharpen your awareness and sensitivity to those around you, especially those you serve. Love and hugs to you.

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  11. Although an early stager as were called I can relate to so much of this. Maybe because I’ve always got closer rather than withdrawn when people have been through tough time, terminal illness and so on I had an unrealistic expectation that others would step up do the same for me. As you mention I also find myself gauging other people’s reactions. Just this morning at church one person was really caring, interested, listening and relational when I mentioned what I’d been through this week and another withdrew quickly. Again perhaps I have unrealistic expectations of church folk! The people I expect to be there aren’t always and vice versa. I am thankful for those who have stepped up when I’ve needed it. Take care x

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    1. I have had the exact same thought, that I would do something so then I expect others to do what I would do. And yes, different contexts of people (like church people) create different expectations. It is a hard adjustment to know and understand which category to place people in based on their actions and behavior. And I’m still surprised at times which people belong where. Thank you for reading and commenting!! ❤️

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  12. Thank you Abigail for your writing which is a treasure trove of advocacy, insights, inspiration and wisdom and I am so thankful for you. Thank you for giving of yourself so generously x

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  13. Your writing is life-changing, Abigail. You are helping give a voice to many, including myself. Before we met on social media, I felt unseen and unheard. Although I still feel this way at times, I’m in a better place because of your writing. Your friend, Gogs xx

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  14. Thought-provoking post, as always, Abigail. A couple thoughts worth embroidering on my pillow:

    – ” I’m way too old and way too sick to tolerate certain behaviors. . .” THANK YOU for that statement!! I plan to steal it…

    – “watch carefully for those who actually want to know the details. . . ” Choose your listeners carefully! Sometimes, those we most expect to offer a shoulder and a caring ear will disappoint, and those we don’t may surprise us. Often those closest just want and need us to be “better” so they can stop being afraid. Eye-rolling is a pretty clear sign we’re not talking to the right audience…

    – “I’m just the wrong person to be complaining to. . . ” – A+ ( I’m going to start saying this A LOT!) but important clarifying point that this doesn’t include certain people like your mom

    – “being unseen and unheard can flatten the most hardy of souls.. . ” – Oh, so true. 😦

    I hope your soul feels a bit less flat, Abigail. You are seen and heard here today. I’m eagerly looking forward to Part 2.

    hugs,
    C.

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  15. Pingback: Unseen and Unheard, Part III – No Half Measures
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