Grieving online

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This week’s post is a Kitchen Table post, where we settle in together with a cup of something warm and have a chat. In this post, we’re thinking about how online spaces have been part of our experiences of grieving. There is now a good deal of research that shows how online practices and communities have helped the bereaved, and particularly for those who are experiencing disenfranchised grief, or grief that goes unacknowledged, is downplayed or treated as taboo. Online spaces provide somewhere for folks who aren’t finding support in their in-person communities - or who need some other kind of support than those communities can provide - to be with others who get it. These spaces and communities have changed over the years as the Internet has changed, too, and as the popularity of different social media platforms rises and falls. In today’s post, we think a little bit together about what different spaces have meant to us and why. We’d love to hear from you, too, if you want to chime in in the comments. 

How important were online grief spaces (like Glow in the Woods and others) to you in your grieving process? Did the importance of online spaces change over time for you? 

Kathy: I truly don’t know how I would have survived the early grief days without my online community of loss moms. Connecting with women who had actually experienced stillbirth was critical for me in feeling like I wasn’t insane (because aren’t you insane if you want to put a blanket over a grave when it’s snowing?) and I wasn’t alone (even though I didn’t have any friends whose baby had died like Tinsley). The Internet was my lifeline and my portal to finding women who understood what I was going through.  

Nori: They were absolutely vital at the beginning, and are still important to me now, although for different reasons. In the very first days of returning home from the hospital without my baby, I knew of absolutely no one in real life who had ever experienced babyloss. All of my friends were having their first babies and going to breastfeeding support groups — I felt like a shameful outcast. Reading about others’ experiences online, especially in places like the Glow discussion board where there were dozens of loss parents in conversation, was the only thing that gave me some hope to keep going. 

Meg:  In the days and weeks after my daughter died I scoured the Internet for any sort of forum related to babyloss. I felt so unbelievably isolated and reading the stories of other families who had experienced such a profound loss made me feel a little bit less alone. I can remember coming upon Glow in the Woods and literally reading back as far as the site would go. It was as if the immense pain I was feeling was reflected in the beautiful words written by other babyloss parents. I also think that reading the pieces written by people who were further out in their grief journey gave me hope that I would be able to survive the pain. It’s been almost four years since James died and on hard days I still go back to certain posts that really resonate with me.  

Jo-Anne: After losing Zia, I found myself adrift, grappling with a grief so profound that it felt as though my world had shifted on its axis. In my search for solace, I stumbled upon many online grief support groups, blogs and sites, but GITW quickly became a lifeline, a virtual sanctuary where I could pour out my pain without fear of being misunderstood or censored. For the first time since Zia's passing, I felt truly heard. 

There was no judgment, no awkward silence, and—most importantly—no attempts to measure or compare the magnitude of my loss to that of others. Instead, there was a quiet, unspoken understanding. Each person brought their own heartbreak to the table, yet we supported one another with empathy and compassion. 

The anonymity and distance provided by the online format allowed me to be raw and honest in a way I couldn’t manage in face-to-face interactions. It gave me the space to cry, vent, or simply sit in silence while reading others’ stories, drawing strength from knowing I wasn’t alone in my suffering.

Even now, online spaces remain my safe haven. They offer a sense of community and connection that feels organic and unforced, where I can process my emotions without the weight of societal expectations. In these virtual realms, I’ve learned to navigate my grief, finding fragments of hope and healing one interaction at a time.

Samantha: As others have said, online spaces were an absolute lifeline for me in the early days. I felt adrift in a world I no longer recognized and I had no idea how/if I could ever recover from this. Reading the stories of other bereaved parents gave me just enough of a light, illuminating those slippery handholds one by one to climb out of the abyss of despair. Other parents who were a little further out than me were able to articulate things I couldn’t yet name, and the tiny bits of normalcy and joy they had managed to reclaim gave me the hope I desperately needed to just keep going. I don’t know how I would have made it without these resources.

What kinds of online spaces did you turn to in your grief for information and/or support? What types of spaces worked best for you and why?

Kathy: I leaned heavily on Facebook’s groups, in particular Stillbirth and Infant Loss Support Group, and Pregnancy After Loss Support Group.  Participating in those groups is also how I connected with in-person support through the New York chapter of Star Legacy Foundation.  

In terms of online publications, I really liked reading Share Magazine and Still Standing Magazine, largely because I related to the reader comments on the articles that were posted on Facebook. Even if I wasn’t commenting myself, I felt like I was interacting with the community because I had exposure to so many different voices. This was especially helpful early on before I was ready to engage, and instead just wanted to read and relate to others. The Now I Lay Me Down blog, Modern Loss, and the Refuge in Grief site were powerful places where I felt in kinship with fellow grievers, too.

Nori: Glow in the Woods was always the cornerstone for me — everything, from the articles to the discussion boards to the reading lists to links to other babyloss blogs. Even in 2019 though, I felt like I was a few years too late for the blogging culture that had created Glow. Many of the blogs that were linked from Glow were already defunct in 2019, and even more are now. I really gravitate towards longer form writing, so that was and is disappointing. Modern Loss is another longer form site that I checked from time to time. They have a specific baby/child section of the site.

Within a day of my daughter’s death, I had the clear epiphany that social media was going to be too toxic for me in my grieving — my algorithm and friends were like 100% pregnancy, birth, and newborn content — so I permanently deleted all my accounts. I never tried to look for babyloss content in those spaces. 

Meg:  The two main places I regularly visited were Glow in the Woods and Megan Devine’s Refuge in Grief site. I deleted all of my social media accounts almost immediately. My loss was in 2021 and I don’t think I had discovered Reddit yet, but I imagine that could be a place to also find others who have a shared experience.  

Jo-Anne: I joined several online communities but GITW became more than just a forum or blog—it was my anchor. I wrote for and followed Still Standing Magazine for a while which was also very cathartic. 

Samantha: My loss was back in 2013, before grief spaces on social media became a “thing.” So blogs were the main source for me. I remember sitting there literally googling, “stillbirth blog” and once I found a few I connected with, I was able to link out to others by reading the comments, and eventually found my way to Glow. I literally read several personal blogs and all of the Glow archives, cover-to-cover (for lack of a better term). I would just read them and sob for hours every day. It was the only way I knew how to exist for many months. The only place I felt I truly understood, truly unalone, and could just be.

Were there any online spaces that didn’t work for you? 

Kathy:  I only had positive experiences connecting with other grievers online. 

Meg:  For some reason, I just didn’t find comfort from online support groups. This still surprises me to this day because I’m a very relational person. I think it might have been too overwhelming to try and hold others’ pain while I felt like I was barely able to breathe in those early days.  

Jo-Anne: I’ve always found blogs and websites more appealing compared to social media groups. There’s something about the depth and structure they offer that resonates with me. Blogs often allow for more detailed, well-thought-out posts that delve into topics with clarity and substance. Websites provide a more organized space where I can explore specific interests or find information without the noise or distractions that often accompany social media platforms.

How have you seen grief support and information online change over time? For example, new spaces, changes in how people participate, differences in content or openness? 

Kathy:  Some of the Facebook groups I had participated in aren’t being updated anymore… I’m not sure if they’ve moved to other social media platforms, given the younger generations are now more on TikTok and Instagram.  But what attracted me to the Facebook group in particular was how open and honest people were in their posts.  Thoughts that I wanted to keep hidden (like that I really fought an impulse to go dig my baby out of her grave the first few weeks), were shared openly with the group.  This really helped normalize my grief experience and gave me the courage to start sharing vulnerably, too. I also loved seeing the pictures of everyone’s babies — we saw past the discoloration, sunken foreheads, and swollen eyes — and we celebrated the beauty of each other’s precious children. 

Nori: In the five years that I’ve been in these spaces, I see less and less activity on the websites and discussion boards. I don’t know where people have moved on to, or if there is somewhere they’ve moved to. I don’t know if I can imagine sharing my experience on a more video-based site like TikTok or Instagram, since so much of babyloss involves ugly crying; the absence of an adorable baby. It doesn’t seem like it would fit there. 

Jo-Anne: Like Nori, I’ve noticed a decline in activity on babyloss support forums over the years. These spaces once served as a vital lifeline for parents navigating the complexities of grief, offering a safe and supportive environment to share their experiences, seek advice, or simply feel less alone. 

It seems that many have migrated to social media platforms, where groups and pages dedicated to baby loss have become more prevalent. While these platforms offer convenience and real-time interaction, they don’t always provide the depth or privacy that forums did. Forums allowed for more meaningful, uninterrupted discussions, and their structured threads made it easier to revisit advice or stories. 

The shift reflects changing online habits, but it also highlights the need to preserve dedicated spaces for grief and healing, whether online or offline.

Samantha: The proliferation of grief-related, and particularly babyloss-related, content on social media has exploded in the decade since my daughter’s death. It’s been a wonderful thing to witness because it has really eroded so much of the stigma and raised so much awareness, and there is now a beautiful community online where I have connected with people who have become some of my greatest friends.

I also feel like the content has become more irreverent and raw over time. People are less afraid to share the messy/ugly side of grief and trauma (something I always loved about Glow in particular), and it’s much easier to avoid the “angel baby”/religious/sugarcoated content if that’s not your thing (it is really not mine, haha!). Dark humor I feel like was mostly frowned upon in a lot of the early online spaces, but with so much content now shared via video/reels — where you can see people’s expression and pain, along with their dry wit or dripping sarcasm —I think people are less worried about being misinterpreted or coming off as callous, and so I am able to find a lot more posts these days that make my bitter/cynical side giggle.

That said, the social media community is tough to keep up with because it’s always moving; it started on Facebook, then many moved to Instagram, now people are starting to migrate more towards TikTok and Reddit. And of course, it’s so hard to avoid triggers on social media, especially if you’ve been recently pregnant or are “friends” with others who are. So it can be a double-edged sword.

What would you like to see in an online space for grief? 

Nori: Glow is perfect for me: the lack of photos or video, the longer, edited writing. It allows the right combination of thoughtfulness and anonymity for me to feel comfortable. The only thing I wish was different was the level of engagement. I wish it was as active as back in 2010! 

Jo-Anne: I’d like to see an online space for grief that combines the depth of traditional forums with the accessibility of modern platforms. It should offer a safe, private environment where people can share their experiences without judgment. Much like GITW. Features like dedicated topic threads, where users can explore specific types of grief or coping strategies, would be helpful. 

In addition, having access to resources such as articles, professional advice, or even guided exercises for healing could make the space more supportive. 

Samantha: I think the most important thing is variety — being able to see a diversity of voices and content types, since everyone grieves differently and comes from different backgrounds. I couldn’t have managed social media in those first, really raw months, but blogs and books (privacy) were perfect for me. Now that I am further out, community is critical. So flexibility and a tool that is able to evolve with your grief I think are key.

For me at least, it felt so validating especially early on to find someone who really reminded me of me. Until recently, that was very hard to do — for any of us, but especially for parents from marginalized backgrounds. But we are thankfully starting to see more bereavement content in a bunch of different styles, not only from just more parents in general (and not just moms, but dads, too!), but also from people of color, trans loss parents, LGBTQ+ families, non-Christian families, etc. It’s a beautiful thing as it allows us all to see the parts of our experiences that are universal, but also the parts that are distinct due to our varying “intersections” of identity and culture. And I think that’s really critical to have, to remind us all that there are no one-size-fits-all solutions (for post-loss healing or prevention of loss), and that we need to always be working towards more inclusivity and more collaboration with diverse perspectives if we truly want to help other families thrive.

What about you? How have online grief spaces worked, or not, for you? Where have you been and where are you hanging out these days and where else would you like to go?