There are many online resources for people grieving the loss of a loved one. Why do we need Grieve Well? The short answer is that I need it. I need a place where I can write about evidence-based grief coping strategies without being overwhelmed by people who are hostile to the notion.

I have a lot of experience with online self-help support groups. I have used online support forums to help me with alcohol abuse, excessive computer gaming and procrastination. I posted daily to online check-in threads for substance abuse at SMART Recovery and gaming at On-line Gamers Anonymous for years. These resources, especially their daily check-in threads, are for me a silver bullet for dealing with complex maladaptive behaviors.

Considering this background, it’s not surprising that within three days of Brady’s death last October, I was emailing the American Foundation for Suicide Prevention asking about online resources. The response was at first encouraging. A bereaved father who volunteered with the AFSP soon called me and talked with me about our losses. He gave me the name of another father who’d lost a son and I called that man and we talked further. This second father informed me that his Christian faith was the only thing that helped him. I am not Christian or a believer in any religion, so this strategy wasn’t helpful to me. However, I was encouraged to look for other support opportunities online.

sproutOver the next several months I participated in Alliance of Hope, Parents of Suicides and several Facebook groups including two sponsored by The Compassionate Friends. All offered similar benefits and exhibited similar problems. They are great places to find people who have had similar experiences and can offer empathy, sympathy, compassion and understanding. Participating in such a community can be extraordinarily comforting when you feel isolated and alone and as if you are the only person who ever felt as you do.

Where every group I’ve ever participated in falls down is when it comes to learning how to feel better. It was very strange the first time I realized that many people who feel the way I do about losing a loved one do not want to feel better. It’s not just that they don’t want to be told to “snap out of it.” They don’t want anybody telling them there may be anything they could do to alleviate this excruciating agony.

When I would post, say, a link to a study showing a correlation between finding meaning in the loss of a loved one and experiencing less severe and less protracted symptoms of severe grief, someone would almost always be offended. They would express shock and horror that anyone would suggest they might ever feel better. They would dismiss the study as flawed, the findings irrelevant and the scientists who did the work as corrupt. I was told you cannot study or measure grief. “Grief is not science,” one critic informed me. “Grief is pure emotion.” Another poster warned me, “You can’t escape grief.”

I am not shy about debating, so I would respond. I would explain that grief, like any other natural phenomenon, is susceptible to study, measurement and, at least potentially, management or mitigation. This would unleash a further torrent of criticism, to which I would further respond. Never would anyone rise to defend the scientific findings, which I found very odd.

I never attack anyone’s post on some topic such as life after death or communications from the dead, even though I see no evidence for believing these concepts, or anything else from the spiritual or religious realms. I’m just not spiritual or religious. Many people have similar attitudes. But although I know I’m not the only non-spiritual one out there, I never see anyone on these groups attack another’s statement of spiritual or religious beliefs. Not so with science. People felt perfectly comfortable making the most pointed critiques of the studies I pointed to and the foundation of my belief, which is that there are evidence-based ways of coping with grief. Skepticism is okay with me, since skepticism is a key part of science. But this went beyond skepticism and was more like hysterical group denunciation — a lynch mob, you could say. 

The first several times times the critical dog pile took place on Alliance of Hope, I persevered and expected eventually I would win converts or at least be permitted to espouse my viewpoints without getting shouted down. Neither happened. If anything, the attacks grew more intense. Ultimately the founder of Alliance of Hope spoke to me by phone and kept telling me, in a voice of wonderment, that I was “so analytic.” She suggested I was arrogant. In a public post, she was far more pointed, accusing me of “emotional hijacking,” whatever that might be. (I suspect it is nothing more than saying something that somebody doesn’t like.)

I was really puzzled about what to make of this. I can understand that some people don’t want science to intrude on their feelings of loss. But it seemed that people were highly motivated to attack any suggestion of evidence-based ways of coping with loss, and that they were in turn defended by moderators and others, while no one but me stepped up to defend evidence-base strategies. I decided to stop being involved with this online forum, and began to look elsewhere.

Everywhere, I found the same phenomenon. People attacked any suggestion of applying science or research techniques to grief and, when I defended my viewpoints, I was either hounded off the site or, in two Facebook groups run by The Compassionate Friends, officially uninvited and, in effect, barred from participating. (Update: As of now, a few months after I originally wrote this post, I have been uninvited from participating in total of four online grief support groups, most recently for suggesting that the “you never get over loss of a child” truism is neither helpful nor supported by the evidence. Very strange.)

This is doubly odd because “there’s no right or wrong way to grieve,” is an explicitly endorsed concept in all grief communities. But it was made abundantly clear that the problem was that I was espousing the wrong way to grieve. I was at first told I was being banned from one group because my debating style was vicious and infantile but, when I pressed for an example, the moderator pointed only to a long-time griever taking offense when I suggested there might be a way to feel better. My conclusion is that I do not viciously attack critics. My problem is that I present ideas people don’t want to hear.

All online groups I have participated in are more or less hostile to suggestions that there might be a way to feel better, and particularly to any suggestion that scientific research has turned up evidence for the effectiveness of different things you can do to feel better. Since this is my interest, I felt I needed to start this blog where, presumably, only people who are interested in evidence-based grief coping strategies will come.

All online groups I have participated in are more or less hostile to suggestions that there might be a way to feel better, and particularly to any suggestion that scientific research has turned up evidence for the effectiveness of different things you can do to feel better.

I hope we can discuss ways to get better rather than endlessly debating whether or not all grief researchers are in the pay of drug companies, which was a theory one moderator of advanced. She triumphantly provided two links to supporting documents. One led to the website of a conspiracy theorist who has written a book claiming George W. Bush was complicit in the 9/11 terrorist attacks. The other was to a website owned by a law firm soliciting clients for lawsuits against pharmaceutical companies. These, of course, are shaky sources, to say the least. Meanwhile, she pooh-poohed the validity of research articles published in peer-reviewed scholarly journals. This is not a level of ignorance and bias I am prepared to spend a lot of time dealing with, especially when the result of my efforts in that direction, as experience has shown, is that I will only be banned again for saying things that people don’t want to hear.

I am not the first person to notice this problem with self-groups for grievers. And it’s not just online groups. I’ve talked to more than one person who was put off face-to-face support groups because those running the groups seemed to be stuck in long-term debilitating grief. My friends wanted to be around people who had overcome grief, not been defeated by it.

This concern about the dynamics of self-help groups is echoed by researchers who study groups. Colin Murray Parkes and Holly G. Prigerson are prominent grief researchers and co-authors of “Bereavement: Studies of Grief in Adult Life,” which first came out in 1972 and is now in its fourth edition. Here’s what they said about self-help groups on page 233:

“Other problems that can arise in mutual-help groups include the way in which some groups become dominated by their most-disturbed members. Unless they have the leadership of a well-trained group leader they are in danger of becoming anti-therapeutic.”

On the following page, Parkes and Prigerson add: “Unfortunately good evidence to support the use of these groups is lacking and, despite the enthusiasm with which they are recommended by many of their members, we need to be aware of the problems.”

This has been my experience in a nutshell. The people who participate the most and for the longest time are the people who are stuck in long-term debilitating grief. They are skeptical and disparaging of anyone who suggests that it’s possible to feel better any sooner than several years at least. Often, these people are the moderators or organizers of the group. They basically want everyone to stay stuck with them in a pit of everlasting grief. “Anti-therapeutic” is one way to describe this. I think it’s just plain sick.

In any event, when I suggest there are things someone can do to feel better, I am always met with hostility and eventually forced to leave the group by the volume of attacks or by outright banning. Hence, Grieve Well.

If you are interested in evidence-based grief coping strategies, you are very welcome to participate. If you are hostile to the idea that science has anything at all to say about grief, or that there is anything you can do to feel better sooner, you are less welcome. I am not planning to lead any dog pile attacks, or to attempt to ban anyone who wants to participate. But there are plenty of online groups for people who are grieving and think there is nothing to do besides cry and wait for time to do the healing. If that describes you, you will likely feel more comfortable elsewhere. To the rest of you, welcome and I hope we can help each other navigate this challenging episode in our lives with less pain and delay, and also improve the ultimate outcome as much as possible.