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

Life’s like that. If you continue to put rubbish thoughts in, you’re not going to have great feelings, and so that’s where the choice comes in, isn’t it – what would you choose? If you could choose your thoughts and feelings, what would they be? Would you wake up and think: ‘I want to have a really bad day today. I want to feel really angry, and frustrated, and not good enough, and, you know… ugh! I just want to stay in bed!’ Actually, I did have that point in my life when it was early on, my condition wasn’t managed very well, and I didn’t know anything about this ‘choice’ stuff. I remember sitting on the edge of the bed one day, and I thought: ‘If this is all life has got to offer me now, I don’t want to be alive. I’d rather be dead.’ And I’m sure I’m not the only person to have reached that point in their life when it’s just all too overwhelming, and all you can see is a long stretch of pain in front of you, because that’s all I could see at that time. I had no idea that ten years later – twelve years, actually – I’d be here feeling great! And I have pain every day. Every single day. Sitting down is painful. Driving in the car is painful. I lost my job because I couldn’t sit down to do the job, you know, so there’s also the feelings of isolation that can come in. I understand all this. But it is all about choice. If you could choose, how would you feel? What would you do, and how would you feel? Would you put in a lot of self-care? Would you be kinder to yourself? We all know it’s about self-care and kindness, but how do you put it into action? Well, you choose. You choose not to listen to that negative voice in your head and you choose to make things better for yourself. So when people put demands on you, you ask yourself the question: what would I choose? Would I choose to make myself worse, because I have to do things for other people all the time? Or would I just once in a while say: ‘No, actually, I’m going to take time out for myself today, and I’m going to be gentle on myself’, and maybe have a day at home, a day of rest, maybe do your nails, do something that makes you feel good and feminine.

And maybe - here’s a really great tip, something that I did very early on, actually, I was so… fed up, let’s say, with not being able to wear nice clothes, and not feeling good about how I looked. I went to John Lewis and I booked an hour’s session with a consultant – it’s all free of charge – and I said: ‘Look, I can’t wear trousers, and I’m having great difficulty with everything else as well, what can I do?’ And they brought out all of the clothes, and I tried everything on, and it was great! I didn’t buy all of the clothes, but I bought one or two things, and they made me feel good, it made me feel in control again, a little bit. That’s what it’s about, isn’t it? Because you feel out of control when you’re in pain and you can’t do much about it… not physically, anyway. So that’s a great thing to do if you’re feeling a bit – unfeminine, if you’re not feeling great about your body image, or your image at all. Try it! It’s free! It’s great. And it’s a little treat, because we all deserve to put treats into our lives.

It’s not just the women that have these thoughts, it’s men too… The partners. They might be thinking things like: ‘I’m not good enough because I can’t fix things. I can’t support my wife properly. I don’t know what to do to help her.’ So, you know, that’s the self-talk that’s going in for you. If you could choose, what would you choose? What would you choose to do to help your partner? It’s really quite simple. Very easy. First thing in the morning, if you can’t feel that wooden box that’s your coffin, you’ve got another day to be alive, and another day to appreciate the little things. I know that you’re probably thinking: ‘She’s just talking!’ I actually live this, and it has made an incredible difference to me. The last three years have been the best three years of my life with pain. I don’t think many people can say that, can they?

Anyway, I’m going to leave it there. There’s not much else to add, except that if you can take one thing away, when you wake up in the morning and you’re in pain, just ask yourself the question: if I could choose, how would I choose to feel? And then, ignore the thoughts that are telling you otherwise and put some good stuff into your life. It doesn’t take much, really.

So, good luck with your journey! In twelve years’ time I hope that all of you are feeling as good as I do right now!