Disenfranchised Grief

General 2 Minutes

I was struggling recently over the anniversaries of the death of several members of the Stage IV Metastatic Breast Cancer (MBC) community and a dear friend, Alyson, shared with me her working knowledge of this concept of “Disenfranchised Grief.” Alyson Tischler is a fellow MBC haver and is just generally a really cool person. She’s also writing for AdvancedBreastCancer.net with me and you can read her profile and articles here.

I’d never heard of the term “disenfranchised grief,” but as soon as I started reading about it, so much that I’ve been struggling with made so much sense. I included a link above to a great discussion about this concept, but my own definition is as follows:

“Sometimes the relationship you have with a person virtually or in a particular context means that you aren’t a part of that person’s life as a whole. If that person dies, the traditional grief rituals that would help with processing that grief are often unavailable. When this happens, there is no outlet for the grief and the grieving person is left with a gnawing sense of loss without a tangible way to express it.”

I vividly recall the death of my original sister buddy, Kari Rousch, and how I felt so awkward with her family. My grief was real and it was significant to me; yet, I didn’t know them well enough to clearly articulate what I was feeling and I ended up feeling like a voyeur or a crasher in the midst of their grief. When they eventually decided to take Kari’s Facebook page down, I was left bereft of even that link with her. It would have been entirely inappropriate of me to say something about this to them–she didn’t belong to me, she belonged to them. Yet, I felt bereft and I didn’t know what to do about that.

I’ve endured the loss of other friends, dear friends, and most recently, the death of my best MBC friend, Emily Garnett. I wrote a post about that loss as well, titled Grief and Love, Love and Grief. Even with the time I’ve had and the experiences I have under my belt, this disenfranchised grief stuff is HARD.

Back to my discussion with Alyson about disenfranchised grief … we started talking about the need for individual rituals and also larger rituals for the MBC community as a whole. As we brainstormed, I started getting more excited about the concept. So, we gathered some advocates together in a FB messenger chat to further discuss ideas and to continue to refine the original concept. We’ve been kicking around a lot of details and ideas together. Alyson and I spoke with Kelly Groslags this week to get her input too.

We have pretty high aspirations and have lots and lots of ideas about grief rituals and how best to help each person in and connected to the MBC community deal with and work through their grief.

What I need from you, dear readers, is your ideas. We want to have multiple levels of this project, from the in person nationally, to locally, to virtual resources and places to memorialize all the dear men and women we lose at the rate of 116 people per day in the US. Please tell me!!

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

26 thoughts on “Disenfranchised Grief”

  1. Hi. Found my way to this post via Twitter. It’s been 1 year since my MBC diagnosis and I’m just now trying to find my footing. In the past year I haven’t experienced loss of co-MBCers but I lost two friends/allies to MBC When I was first diagnosed w/ BC 10 years ago.

    Of those two women, one I knew well (before BC) and the other I met when diagnosed. I was able to attend one funeral and in retrospect that did provide some closure. For the other, we never met in person; talked on the phone once and we were FB friends. Her passing was difficult to process and I appreciate even now when I see her friends tag her in FB posts.

    What would help with the grief of each of their passing? That’s a hard question. I think there may be no one answer given the different relationships we have with fellow MBCers and the way each of us prefer to grieve in our own personal ways.

    A list of suggestions to help guide people may be helpful to assist with navigating this hard topic. Micro- groups on social media, subset of the #bcsm maybe, a webpage on a national organization website for remembrances that anyone could contribute to could be nice. It needs to be a national – or international – organization so there is perpetuity to the site and it takes the burden off other MBCers to maintain.

    Those are my initial thoughts. Looking forward to seeing how this evolves and hoping to connect with more of you.
    -Donna

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  2. I think this is a great idea! When Emily died (and I only knew her through her posts and others’ mentions of her), I was so upset and no one to even say “I’m sorry” to. At the time I was moving so I didn’t even get a chance to post on her FB wall. I wonder if there couldn’t be a FB page just to express our grief? Seems simple to me, but then there are FB rules …

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  4. I love the idea of a website and/or Facebook page specific to losses from mbc. Or as Donna suggested, a page on a national or international organization’s website. I think it would be a lovely way to remember, share and grieve. Some might think it’d be too sad, but I think it could be quite special. There have been so many losses since I started blogging. So many indeed. Thank you for working on this. A true labor of love. x

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  7. Disenfranchised grief is such an interesting concept—I’d never heard it before, but it certainly fills many painful voids.
    I don’t have any ideas at the moment, but I wish you and your group of innovators all the best.
    💕

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  8. Myself and also friends have used the growth of flowers as physical memorials. Packets of seeds shared to watch a pot of miniature sunflowers bloom at the same time all in different parts of England. A bag of Forget Me Not seeds given at my mum in laws funeral for people to nurture and grow and then enjoy, also sent on to people unable to attend or who just wanted to share enjoying seeing flowers blooming whilst thinking of her. Favourite colours, scents, flowers all incredibly personal.

    It’s a wonderful idea you have I wish you all so much good luck with it!
    X

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    1. This is beautiful! I love the idea of planing flowers!! A friend of mine who is Jewish had trees planted in Israel to honor some of her loved ones who had passed and it sounded so lovely to me. Thanks for reading and commenting!! 🙂

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  9. Thank you for acknowledging a difficult subject- loss of a friend to X. Any diagnosis fits here. I learned of this disenfranchised grief years ago when I lost a friend to suicide. There are no books, scarce literature or studies to describe the experience of disenfranchised grief in the friend or acquaintance.
    There is an awkwardness and isolation to losing a friend. We have no rights and yet feel such a deep pain and sense of loss. Then, there is the guilt of suicide. Could I have saved her? If only… if only…

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  10. Hi Abigail, Every time I see a post on twitter of someone dying from mbc, I screen shot the post and their picture. I pray for the family and the read some of the twitter posts she had written to feel close to her. Sometimes, I cry for her. And sometimes I cry for me.

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  11. Hi, Abigail, I appreciate your post. You’ve described so well what it feels like to lose someone you have a real connection with, though you’ve never known them in person. I never heard the term disenfranchised grief before, but it’s real, and I’ve experienced it too. The ideas here for creating a ritual to honor the person who died, and our connection to them are truly wonderful. One more thought: Perhaps create an expressive writing handout, with writing prompts for exploring the complex thoughts and feelings that are evoked by disenfranchised grief. LMK if this might be of interest as a contribution to what you’re working on. I think it’s something that could be offered in various ways.

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