Transcript of VPS Podcast 11 - Supporting people living with lichen planus: a presentation given by Bridie Nelson

This is a transcript of VPS Podcast 11, which is an audio recording of a presentation given by Bridie Nelson at the VPS Super Workshop on 9 May 2015. You can listen to the podcast at Podcast 11 - Supporting people living with lichen planus: a presentation given by Bridie Nelson


Bridie Nelson: Thanks for asking me here today, Kay, David [Kay Thomas and David Nunns of the VPS]. I’m Bridie Nelson, and I have erosive lichen planus of the vulva and the mouth. I’ve had it since 2003, so I’ve lived with it for quite some time now, and… it gets better! Living with a condition such as erosive lichen planus, it does get better, you manage to cope, you find your coping strategies. But sometimes that takes a long time, and I think you just have to go with it, and try a lot of things, and find what works for you, because we’re all so different. I have a little toolkit. Aqueous cream is the one thing that I would not live without, and I use it pretty much every day. Dermovate is another one that I use quite often… So yes, you’re just careful, you find out what works for you, and you stick with it, and eventually life is OK again, it gets better.

So I hope that you take something positive away. I don’t know where you all are now. I don’t know whether any of you have got lichen planus or not, or lichen sclerosus, which is also pretty similar. I’ve also got vulvodynia, and a few other things, so I’m no stranger to pain everyday. But you can get beyond the pain. It takes a little bit of effort, and you have to watch the thoughts that come into your head. Because we’ve all got that negative voice, haven’t we? We’ve got that voice inside our head every day that says you’re not good enough, you’re not feminine enough any more, you’re not really a good enough partner because you’ve got these conditions that you can’t have sex and, you know, even touching is – you may not want to go through the process because you’re frightened of where it’s going to lead. So we’ve all got that voice. I mean, I’ve got that voice. It says: ‘Bridie, you’re fat. You’re really fat. And you’re ugly too, actually. And you’re pretty stupid’, because I haven’t got a university degree, so I judge myself on that, you see. And I’ve got a choice at that point. I can listen to it and think: ‘I really am fat! I really am not very pretty, am I? And I’m not very feminine, either, because, you know, I’m pretty much scarred up down there.’

Or I can think: ‘Well, OK, I’m not going to believe that. I’m going to believe something different. I’m going to be putting the things into my life that are going to make me feel good.’ So, pretty much, that’s what I do every day. I wake up and I say, ‘I’ve got a choice today. What would I choose? How would I choose to feel today?’ It’s all about choice, and that puts you back in the driving seat. Because otherwise, you’re just going along with that little voice in your head that’s making you feel so bad every day, like you can’t wear the clothes you want to wear, because you can’t wear tight trousers, perhaps, or you can’t wear tights. I went through years of not being able to wear tights or trousers. I couldn’t wear knickers either, actually, because the pain was too much. But that has got better, I have to say.

So yes, life’s a bit like a sausage… Has anybody heard of Richard Wilkins and Liz Ivory: Broadband Consciousness? No? They have a really great way of explaining the power of choice and they say that life is like a sausage machine, and it is, actually. So, this is the sausage machine, and the ingredients you put in are your thoughts, and what comes back out again are your feelings, right? So, if you wanted to make a juicy fat beef sausage - sorry about this, but we’ll say sausages, what would you put in to get that? Would you put in fat, gristle, all of the rubbish? Or would you put in the good stuff, the premium beef? Turn the machine’s wheel, and out would come a beautiful sausage, wouldn’t it?