Connecting With Other Brain Tumor Patients Is Important

Last night I participated in my first Twitter Chat – the monthly #btsm (Brain Tumor Social Media) chat. I was surprised by how much I enjoyed it and how quickly the hour went. It featured patients, carers, family members of patients, MDs, researchers, and more. I found it lively, informative, and also inspiring to see how many people are engaged and participating in the community.

If you don’t know what a Twitter chat is (and I didn’t, precisely, before last night), it’s a serious of tweets (from anyone, really) tagged with a specific hashtag – #btsm in this case. A moderator (not always necessary) proposes a topic (eg. T2: “What have you been struggling with and how are you working to overcome your challenge?”) at some regular interval. Folks respond, hastagging their tweets appropriately. It’s quite a nice format. You can lurk unnoticed, just reply to topic prompts, or even reply directly to the tweets of users whose words catch your eye. The hashtag also lets you revisit the entire chat later with a simple search. Of course, everything you tweet is public, so you’ll probably want to check out some tips and tricks for a good Twitter chat.

Twitter is such an interesting and problematic app/website. Most days it feels like a raging dumpster fire encircled by angry clowns all shouting at each other. However, I found this particular mode of interaction to be nearly ideal for sharing information and “meeting” people – all of whom share a pretty crappy reason for huddling together digitally. The Twitter tools enable a spectrum of engagement that, as an avowed introvert, I really appreciate.

But, as you’ve probably guessed by the title of this post, the most important thing I learned from the #btsm chat is how much I needed to connect with other patients. It’s hard to overstate how lonely a terminal cancer diagnosis can make you feel. Especially when you appear to be healthy. There’s simply no substitute for knowing that the people in the conversation understand, really understand what you’re going through. The struggles are the same; the pride in our various accomplishments is infectious; and even the shared irritation with petty indignities is reassuring. (I’m just waiting for that “This is what someone with brain tumor looks like!” t-shirt idea to come to fruition now.)

So, for the time being, I’m riding high on good feelings about the #btsm Twitter chat. The only down side is that I have to wait another month for the next one.

See y’all in the new year!