Shift.ms

Most people with multiple sclerosis (MSers) are diagnosed between the ages of 20 and 40; a time when they’re making major life decisions. Diagnosis can force people to rethink their long-term plans. As a result, many people with MS feel isolated, both from their loved ones and the life they once knew.

Reducing isolation in MSers is one of our charity’s aims.  Our website hosts a non-judgmental forum where our members can ask questions, rant and share experiences with people who understand. We also have an active Twitter community of MSers, who face the same issues as our forum members.

Many MSers don’t talk on Twitter about their MS. This could be because they haven’t disclosed their condition, or they don’t know anyone else with MS. Yet every day we see in our followers a rich source of information and potential peer support for MSers who feel isolated. We wanted to offer MSers the opportunity to talk – anonymously if they wished – to our thousands of followers. So, we set up the ‘Twitter Takeover’, inspired by ‘rotation curation’ (https://en.wikipedia.org/wiki/Rotation_Curation)’. By turning an existing platform on its head, we’d be giving MSers the opportunity to connect with their peers and reduce their feelings of isolation.

As a charity, handing over our Twitter account to unknown people seemed a big risk and not ‘the done thing’. The idea made our trustees very nervous. However, it was a risk we were willing to take (plus we’re not really into ‘the done thing’). We agreed that the takeover would happen each weekend, so that we could maintain control through the week.

The first brave soul to do the takeover was @DJ_DSouza (Chris) in November 2013. Chris shared pictures of his green smoothies, talked about rap music and asked people for advice on leg spasticity and disease modifying drugs. He was nervous, but at the end of the weekend he didn’t want to leave (something which many people feed back to us).

Since, 69 other MSers have taken us over. We also now have a community member, Hanya, who manages the takeover admin (recruitment, giving advice and getting feedback). The takeover is now booked up into 2016 – proof of its popularity.

Our takeover has helped MSers access previously unattainable peer support from people who understand. In addition, our followers often report how they like simply observing the takeover. Seeing the wide range of MSers from all walks of life, helps observers feel less isolated and reinforces that MS doesn’t discriminate. Just as no two people with MS are the same or have the same symptoms, no takeover is the same.

Our Twitter account (www.twitter.com/shiftms) is a live example of how people use the takeover to get the support they need, and at the same time support and reassure our followers. As far as we know, we’re the only health community to do this, and we’re really proud to be doing so.