We never know what issues are going to come up at the Dublin MS Meetup Group. This month’s #MSCafé was no different.
We gathered outside the IFI Temple Bar in warm sunshine and surrounded by the sounds of the city. Here people meet one another for the first time, catch up with old friends and, in the jigs & the reels, slowly begin to open up.
Facilitation is vital to help ease our fears of social interaction with strangers- you know, the awkwardness that comes with meeting new people can be eased with good processes.
Decision making: Healthcare & medical
Who gets to make them? What information is available? Where does the information come from? When does the decision need to be made, if ever? And HOW the heck do we actually make the choice? Benefit/risk ratio, side effects, no effects, needle phobia, hospital hatred & clinic conundrums.
The topic of the day was Treatment Decisions and people quickly got into the tough stuff. When you don’t trust your clinician to make appointments or follow-up, to actually get to a decision about treatment can be another 20 steps in the making. And what if the message you’re getting from the HCP is you’ll need to get worse before you’ll get a place on a clinical trial? How messed up is that? But how do we know if we heard them right? How do patients navigate the dreadful health system?
We need witnesses, allies we trust and who will come with us on clinic visits when we need them. Someone who hears the details while you’re having an “Oh shit” or “WTF?” moment. Usually not your mother/father nor someone who’ll dominate the conversation. Choose wisely.
We chatted tremors, ‘systemic failures’, follow-up (or not) by HCPs, having a witness at appointments (they are there to hear what you don’t & for moral support- not to play hero) and the joy of having children. We giggled at the awkward silences that come when you crack an MS joke with people who aren’t MSers *insert awkward silence/TutTut/weird reaction here*.
People are strong, people are wise, people are kind & people are…people. We meet in the Dublin MS Meetup Group to share our experience, our skills and act to bring positive change in our own lives. How do you connect with other people living with MS or do you bother? Let me know if the Meetup thing looks good to you.
Founded 7 years ago by me, Emma Rogan, the Dublin MS Meetup Group is the original & longest running MS Meetup in the world. We’re proud of who we are and what we’ve achieved.
Check out Dublin Multiple Sclerosis Group http://meetu.ps/c/csNn/1792V/a
Copyright Emma Rogan