Patrick: What’s the biggest misconception you’ve experienced?
Karen Vernon, Consultant Nurse: I think, again referring back to the original question, it’s often at the point of diagnosis that people think they are automatically going to end up very disabled and in a wheelchair. And I remember being given a statistic when I started, you know, my MS nursing career, that it was a one in ten, and I think that still holds true today. However, you can’t take away the impact that when you are given the diagnosis of MS that it is, I think, human nature to think that you are going to end up very disabled and you are going to need a wheelchair. And it’s about balancing that fear along with the actual research, but also the experience of people. And that’s why, with Shift MS, with the MS Trust, with the MS Society, actually people being able to talk to one another, people who live with MS day in, day out are the most informative people, because you live with it, we… it’s our job. And actually, the impact that it has day to day when we say a fact, sometimes it can not ring true, it sounds very medicalised and oh, of course you’ll say that.
But actually you need to temper that with reality, so that is provided by other people with MS. And it’s, as I say, it’s not ignoring anyone’s intelligence, because unfortunately there still will be a percentage of people that that is still the case for, but the timeframe to that happening is very different for everyone and the fact that it doesn’t happen to a lot of people I think also needs to be, you know, highlighted. I know for us, when we do the information sessions for newly diagnosed, we do, you know, we do cover this and so we have patients that come in and talk to other people newly diagnosed and we have both people who have relapsing remitting, but also patients with progressive MS, so they actually see, you know, that it is a spectrum of disease. And again, I’m going to go back, everyone is individual and it is very difficult to individualise, particularly in the early days, but it’s to also give, you know, the factual information that that isn’t going to be everyone’s MS journey.
Patrick: Okay. And what have you found the obstacles for getting that message across to people that you’re not necessarily going to end up in a wheelchair or it’s all going to be different?
Karen Vernon: I think part is quite understandably people’s fear, because when you are diagnosed with MS, for that person sitting getting that diagnosis, they’ve often not heard of it, you know, it is in the bigger scheme of things a disease that no-one else in your family may have, none of your friends may have, so there’s that lack of understanding at that point of the disease. So of course when you’re told, you will automatically think of the people that have been in the press that have had it to the extreme, if you like. And also, obviously at the moment there’s a lot in the press about the, you know, the euthanasia, the right to die, and a lot of those people have got, not just MS, but advanced neurological disease. So those are the people that automatically spring to mind, which is totally and utterly understandable. So it’s trying to balance the… what the immediate knowledge of MS along with, if you like, the reality and trying to get a balance.
Patrick: Okay. Okay. Just sounds like trying to find a balance and sounds like places like Shift MS really help to.
Karen Vernon: Yeah. So certainly I’m a big believer that people get information from a number of sources, not just the healthcare professionals, but like I said, the people that live with it day in, day out. Your experiences are the most important and when you’re given a diagnosis you try and identify with someone and you’re not going to find that within a hospital, and it is only through talking and different medias, whether it’s face-to-face, whether it’s through, you know, social media, that you can get that information and begin to re-identify yourself, if you like. Because I think that point of diagnosis is a very… it’s a major, obviously it’s a major impact on the person’s life and you remember that. Most people remember the date they’re diagnosed, who told them, how they were told, and ultimately, the support that they were given. And it’s trying to get that right and it isn’t just all from a medical perspective.
Patrick: Okay. Thanks Karen.
Join the Shift.ms community: https://shift.ms/
Watch more videos here: