Morning reflection on Online Communities & Carer Research

Today I joined an online community’s morning social. This community provides different activities for their members but one of their highlights is the accessibility to being in company of other respectful and supportive people.

The morning social included a set of agreements prior that had to be accepted, most of them around privacy and respect. Aside from this, the way the social developed was in the form of “shares”. Each individual, if up for it, would have an approximate amount of time (timed by the volunteer host on the day) to express anything in their mind – from deep thoughts, to a song, or simply a story or personal reflection. While opening up about whatever layer chosen to be spoken of was fascinating, the interaction of others was equally so.

During this space, in which a person has a certain amount of time to share their thoughts, people are allowed to raise their hands and move their fingers often in sign of agreement or support, their hand on their chest in sign of understanding, feeling or comforting, perhaps even a way of saying “I feel that, I see that, I hear that”. The respect within the community was to admire, I experienced what we should be experiencing on a day to day. The concept of consent and most importantly, that sharing doesn’t mean you’ve got permission to comment of an individual’s thoughts and go-throughs. What I mean by this is, aren’t we used to responding when someone shares their thoughts or an experience or their feelings? Don’t some people diminish the value or importance or over-exaggerate and perhaps even make the commentary worst than it is. Often times, it is the response that we get that affect us more than the problem itself, and the ability to share shouldn’t be confused with the ability to take on other’s opinions on our experience.

It was a great way to acquire new learnings not just to work on my active listening skills but to understand the way a contemporary supportive online community can work. A different structure model, a true safe space in which its format seems to have very happy and trustful members.

The study of the effects of online community groups within the cancer caregiving field has been poorly explored and while there are some published papers on the effects of online community groups for cancer patients, there is little information available on how such can effect their respective caregivers positively. This would therefore make my research efforts useful – as per say, if I were to choose an online video/audio community in which the format was similarly to the one explored earlier, I would be exploring an emerging field with fresh research that would benefit its stakeholders directly.

New writing: That shitty google search I regret doing

As part of my next steps, I mentioned I would update a new chapter of my story – collect thoughts and responses and then continue with my analysis.

Extract from my writing:

When I did all those google searches, I truly was trying to stay optimistic, it wasn’t a self-torture method in which I was aware that percentage was going to come up. I guess maybe I was trying to find an explanation to how it all just came to happen and what is meant to happen next. After all, one day you notice your loved one is unwell, the next you’re told it’s a tumour, the next it’s malign, the next it’s got a name, the next you are expected to accept this is reality and is here to stay. 

Just like that. No guide, no manual, no explanatory video of what to do next. 

Everything had changed the minute I heard my mum’s unwellness was cancer, but doing that search served as a confirmation of that reality. It’s like, I had been trying to process what I had been told, trying to perhaps lessen the effect of it by telling myself “it can’t be that bad, it’s my mum, she’s healthy, she’s always been healthy” or “hopefully, there is a cure, more options… like with other cancers”. 

Feedback, responses:

Today, 23rd of August 2021, I posted one of my writings, an extract from a chapter I am yet to finish – but I wanted to involve comments of other carers who, like me, might understand the anxiety of searching up a loved one’s diagnosis online. What thoughts do they have on what I’ve said? Can they even relate? What advice is there to give? And so to my surprise, there have been some responses and most, I’ll be including in the continuation of the writing.

Disclaimer. Warnings. Making people aware. Hope. (key words from comments)

Some of the observation here so far are very interesting – there’s definitely relatability as well as searching for answers and finally, holding to hope and optimism. I love to see it. I will include this, with permission, as part of the continuation of my next reflection – even against the numbers, the percentage can still be your loved one – no battle has been lost.