Getting grief support in the digital world

During this time of social distancing, many of us are delving deeper into the digital online world. There are multiple ways to interact online  – Zoom meetings, WhatsApp chats, Facetime, and many more. It certainly can be comforting to be able to chat to friends or take part in choirs or book groups or any other such activity. For those who are grieving, there are a lot of resources out there, including forums and support groups, sometimes made up of people who would usually have attended in person.

With all of this digital interaction, I thought it would be worthwhile reposting an article I wrote some time back, with some updates and rewrites in these circumstances.


 

Digital grief support can be a life-saver

When I first lost Catherine I was out of my mind with grief. I searched desperately for anything that would get me through the hours, days, weeks. Quite quickly I discovered The Compassionate Friends and I signed up to their online forum.

It was the first time that I had participated in a forum, and I was a bit nervous about privacy. But the fact that you had to sign up and confirm that you were a bereaved parent gave me some confidence. I then also discovered it was moderated – an important feature when writing about personal and sensitive topics.

The forum turned out to be extremely helpful for me for the first couple of years. After then, I visited periodically. Depending on how I was doing at the time, it wasn’t always as helpful as it had been at the beginning, as I was getting reminded of feelings that I would rather not return to.

(If you are a bereaved parent or sibling, you can find out more here: https://www.tcf.org.uk/content/online-support-forum/ . I do recommend this as a very helpful source of support.)

When I was diagnosed with cancer 4 years ago, I discovered once again how helpful it could be to find a community of people who are going through something similar. This time it was cancer forums for me. Describing my journey, finding out about other people’s experiences, comparing notes, trying to encourage those who were at an earlier point, were all part of of this. Not all of the information I read was correct, and some of it was misleading, but it certainly helped me feel less alone.

 

Getting involved with ‘online’ support groups

At the moment, during this time of social distancing, it is really useful to be able to engage with people through digital means. Many of us are stepping out of our comfort zones in exploring technology as a form of communication. It’s perhaps helping us keep our sanity during this rather crazy and unique time.

There’s a world of information out there, as well as entertainment. Whether it is our daily news fix, ideas for baking or crafts, cute animal videos, virtual visits to nesting birds or zoos, there is endless potential to fill up our days.

When it comes to grief support, there is also quite a bit on offer. There are possibilities of joining in with existing groups, or finding new groups. A ‘group ‘could be a Forum, a private or public Facebook group, a Zoom meeting, conference calls, or anything else.

But while we might be happy getting our news and entertainment from the internet, do we also want to get our grief support this way? If so, how much should we get involved or how much time should we spend? Those are questions we each need to answer individually, of course, but I thought it might be helpful to draw attention to a few of the advantages and drawbacks that I have observed. You probably have your own experiences to add to this.

There are advantages in using online groups as a form of support:

  • You can relate to each other, realising you’re not alone in what you’re going through. It is so helpful to discover that what you are going through is not unique.
  • It’s possible to make new friends, often lasting relationships.
  • It can provide a safe outlet for deepest feelings, without overburdening those around us.
  • Sometimes the relative anonymity of a forum helps us open up in ways that we can’t in our daily lives.
  • Forums can be sources of useful information. This goes for all social media, including Facebook.
  • In-person support groups can be great, but with the internet forums, it doesn’t matter where you are or what time zone. You can visit 24/7. (This is even more vital during the lockdown and social distancing.)
  • As you gain strength, you can help others along the path.

On the other hand, there can be some potential drawbacks:

  • You can find yourself comparing yourself unfavourably to others. That’s one of the ‘biggies’ of any type of social media. You might feel you’re not doing as well at coping as someone else. On the other hand, you might feel you’re not grieving as hard as they are. Whatever the comparisons, it can lead to feelings of discomfort and discouragement.
  • Most ‘grief’ groups will have a flow of people joining. The presence of people who are new on the journey of grief can send you back to your own earlier pain.
  • Even on a moderated and private forum, there is never complete assurance of who is taking part.
  • Forums are places where personal experiences are described, and many comments are about something that was bad or difficult. Not as many people will take the time to write up their good or okay experience, although it does happen. Unless you take this fact into account, you can end up thinking that things are worse than they are.
  • Social media is quite addictive. It can be very easy to check for the latest posts, but this can mean that you’re continually thinking about the subject (your grief, illness, or whatever the subject) which isn’t a healthy balance. Even in the midst of the deepest grief, we sometimes need to give ourselves a break.

We don’t have control over what other people write, but we do have control over how much we read it. The best rule of thumb is usually the simplest: If your time on a groups leaves you uplifted, continue. If it’s bringing you down, perhaps try to step away.

Staying safe in the online world

If you find a group that you’d like to join, you might want to check whether it is moderated. Being ‘moderated’ means that there is someone looking over the content, and helping to manage and prevent unnecessary hurt. Usually the moderation helps to keep the discussions in line with the ethos of the group.

Spending time in any area of the digital world, even the ‘comments’ paper of a newspaper, or as something as seemingly harmless as a bird-watching Facebook group, does not mean we will always avoid controversy.  Some people seem to use the cloak of anonymity or distance to be intentionally hurtful. Being on the receiving end of unkind comments is really not something that we need when we’re coping with our grief.

If you do find yourself a target for abuse, then this is a useful website with some excellent advice: Get Safe Online

Let’s hope that whatever time we spend on social media or in the digital world, we will find it uplifting and beneficial. When it’s not, it’s probably best to switch channels.


Here are some examples of online grief support groups.

I am not endorsing or recommending these – just want to give an idea of what can be found.

Sue Ryder

Grieving.com

The Compassionate Friends online forum


PS. This is another resource on ‘dealing with hate on the internet’ with very good advice. Although it is written for public figures, the tips in here can apply to any of us. You can access the full report here from the website: www.Counterhate.co.uk

DealingWithTrolls

SpidersWeb

Time spent on the Web can be productive and uplifting, or it could be unhelpful. Let’s try to navigate safely.

Let’s hope that whatever time we spend on social media or in the digital world, we will find it uplifting, and also have the willpower to switch it off when it is not.

2 thoughts on “Getting grief support in the digital world

  1. Pingback: News, Zoom meetings, training, further reading | A Valley Journal

  2. Pingback: Coping with our grief thoughts during lockdown | A Valley Journal

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