Each ‘phone call starts the same: “Hello, this is ME Connect”. What happens next is down to the person on the other end.
“You might get someone saying: ‘I’ve rung up, but I’m not sure what I want to say. You might get tears. Or you might get a question,” explains Hilary Briars. “When we answer the ‘phone, we never know.
Since it started in 2003, ME Connect, the ME Association’s information and support line, has taken more than 35,000 calls like these.
Each one dealt with sensitively, professionally and – perhaps most importantly – in total confidentiality.
Sometimes the caller needs someone to talk to, a listening ear. After all, as well as the physical illness, ME brings a bulging suitcase of unwelcome emotional baggage; isolation; guilt; anger; frustration – feelings which are hard to express.
“It’s an illness that’s not always easy for other people to understand,” says Hilary, ME Connect’s manager, “even those closest to them. A person with ME can feel cut off from the rest of the world, as if they’re standing still in time.
“To be listened to by someone is quite a gift that we can give. When you feel isolated, misunderstood, it’s a relief to be able to talk about those feelings and know that the person on the other end won’t judge.
Other times, it’s practical support.
WE DEAL WITH A MASSIVE RANGE OF ISSUES EVERY DAY OF THE YEAR
“We get a massive range of questions – from employment rights to relationships and money. We can signpost people to the right information, such as the leaflets produced by the MEA, or to people who can help them. We even have our own dentistry expert. So we can help with most things.
“What we would never, ever, ever use is the word ‘advice’. Advice is very different. We’re here to listen, to signpost callers in the direction of information that they need. But we’re not here to tell them what to do.”
The line started as the Listening Ear service. It was revamped in the early nineties, when Hilary, who herself has ME, took over as manager. It is now open every day of the year, staffed by 25 trained volunteers.
Calls last, say Hilary, as long as they last. Sometimes it’s a quick five minutes. Other times, it’s an hour. It’s down to the caller and what they need. And there is also an ME Connect email, for those who find that an easier way of contacting us.
“These emails go through to the MEA office, so I would say that it’s best used for factual enquiries,” explains Hilary.
IT CAN BE NERVY – CALLING US THE FIRST TIME
“When people call us for the first time, they may be nervous, or not sure of what we can offer. We try to put them at their ease, and tell them to take their time. Most of our calls are from people who have ME, but we’re also here to help family or carers.
“Our confidentiality is crucial. I’m always a little bit surprised that callers do sometimes say to us: ‘is our conversation completely confidential?’ When they know that it is, they know that they can open up and tell us anything.
“To anyone who hasn’t called us before, and who’s maybe nervous about picking up the ‘phone, I would always say: ‘talk to us – we’re here to help.
ME Connect, The ME Association’s Information and Support Line, is open every day of the year from 10am-12noon, 2pm-4pm and 7pm-9pm by calling 0844 576 5326. All calls are treated in the strictest of confidence.
Or email firstname.lastname@example.org
Call costs to 0844 numbers are determined by your telephone provider. Please check your contract for charging details. The service charge is 7p a minute, from which the MEA receives 3p – plus your provider’s access charge. Calls from mobiles and other devices can be considerably more expensive than from a landline.