Listen to the patient, just listen to what the patient is telling you, because sometimes they’re not really telling you what they need to be telling you. You know, I go to my doctor and he says, How are you today I say, Oh, I’m fine and I think, then I think to myself, Well, why am I sitting here if I’m fine you know? But then he’ll ask the right question, he’s okay, he’s good. Yeah, just, just get the patient to talk, don’t just make a judgement before you hear what the patient is saying.

You just said your GP was asking the right question, what is the right question he’s asking?

What he does is, which is very, very clever and it’s very, very cringing sometimes, he’ll go back and he’ll work his way through your last few consultations, and then he’ll say, So what has changed and that’s clever, that’s clever to go back through. My currentthe two GPs that I would see, they’re the only GPs that I’ve ever experienced that have done that. They’ve gone back and worked forward to the present. I think that’s quite important because sometimes you forget about why you’ve been to the doctor before, and you think you’re going with something new, where in fact it might be something you’ve already seen them about. They’ll think, Well, six months ago you came with that, and now here you are coming with it again today, maybe we need to look at this do you know what I mean? And I think that’s quite useful.

Why do you find that useful?

Because you forget. You forget. Say you’ve got a headache, yeah, say I’ve got a terrible headache today and I think, Oh, I’ll just take some paracetamol and then it goes on for a week – this is an example, I’m not saying this has happened, and then I think, Right, after a week, I’ve still got it, I better go back to the doctor and then he’ll maybe go back and say, Well, six months ago you had that and you came back a month later, and you’ve been coming back with this. So maybe we need to really look at this do you know what I mean? I’m just using that as an example. Whereas I might[uses finger gesturing to head] when you’re not feeling well, your brain gets fuzzy, you don’t remember, so I probably won’t remember that I’ve been back that often.

I don’t think it would help me. I would happily go and listen to other people’s[shaking head] but talking about my condition isn’t going to help me feel better about it. it’s not going to cure it, talking about it just reminds me that I have this and my coping mechanism is to not think about it and not talk about it. But, I could go to these groups but as a listener as opposed to talking about me. Is that selfish? Hmm
Sometimes it’s quite nice to talk about something without it becoming a discussion or a competition. You’ve got a sore arm, oh, well, both my arms are sore. How sore are yours? Well, they’re sore. Oh, well, mine are worse. Now, that to me is not, that’s not a positive way to deal with something. I think if it’sif someone just wants to talk aboutI’m a good listener, you know, I’m quite happy to sit and listen to people.

I’m not saying that I’m perfect because I sometimes do interrupt, I think, Oh, I’ll chip this one in but I would go and listen to other people talking and be quite happy to do that. But for myself, I just don’t think I would gain anything, talking about it to other people.

I think it would just endorse the fact for me, something that I’m trying to live withI would hate to think, to go along to one of these groups and think, I’m dealing with this really well, right I’ve got this, I’ve got this, I’ve got this. I’m taking this medication, that’s fine. I’m able to go to work, I’m able tordquo; blah, blah, blah, and then go along and hear somebody saying, Oh, well, I’ve got this and oh I don’t go out anymore, and then oh and I can’t do this and I can’t do that. I’m in this pain, I’m in that pain

I don’t want negative stuff, I don’t want to be sitting there, thinking, Oh my goodness, am I taking my illness too lightly Should I be thinking, Oh my goodness, I’m really ill, I maybe shouldn’t be going to work, I maybe, I maybe should be lying in my bed in the morning, maybe getting up at lunchtime and maybe not even doing the gardening anymore because it’s too sore Does that make sense? I mean Iyeah.

What would be your advice for healthcare professionals?

Oh, wow. That’s a big one, that’s a big one. Listen to the patient, just listen to what the patient is telling you, because sometimes they’re not really telling you what they need to be telling you. You know, I go to my doctor and he says, How are you today I say, Oh, I’m fine and I think, then I think to myself, Well, why am I sitting here if I’m fine you know? But then he’ll ask the right question, he’s okay, he’s good. Yeah, just, just get the patient to talk, don’t just make a judgement before you hear what the patient is saying.

You just said your GP was asking the right question, what is the right question he’s asking?

What he does is, which is very, very clever and it’s very, very cringing sometimes, he’ll go back and he’ll work his way through your last few consultations, and then he’ll say, So what has changed and that’s clever, that’s clever to go back through. My currentthe two GPs that I would see, they’re the only GPs that I’ve ever experienced that have done that. They’ve gone back and worked forward to the present. I think that’s quite important because sometimes you forget about why you’ve been to the doctor before, and you think you’re going with something new, where in fact it might be something you’ve already seen them about. They’ll think, Well, six months ago you came with that, and now here you are coming with it again today, maybe we need to look at this do you know what I mean? And I think that’s quite useful.

Regularly seen at clinic, they’re available daily if I need help, you know, there’s a helpline, and they’re really, really good if I need help. If I need anything, they’re very, very good. We also have a unit [locally] for people with rheumatoid arthritis and other arthritic things, they’re very good at supporting. So that side of it, I’m well supported on.

I just ask. I just ask, I don’t just sit there and [eh] yeah, probablyI’m probably quite annoying now, actually, when I think about it [laughs]. they’re probably saying, Oh no, here she comes again [laughs] I just ask, and if they saymy, the rheumatology consultant is great, he’s great, very approachable.

It gives me a confidence that I canit’s a trust, isn’t it? And my GP, you know, I seem to be ignoring him in all of this, but he’s very good as well. He’s very good, he knows me well, he’s been with me through all of this, and he does explain everything very, very thoroughly, very clearly and if there’s anything that I want clarification on, he will explain. He won’t justyou know? And he listens, that’s a big thing, you know? They both listen. So yeahwhich is great now.

I was offered CBT, I was offered the pain clinic and I thought, Talking about this isn’t going to make me feel better, I know what I’m living with, talking about someone else isn’t going to make me feel better it’s not going to make the pain go away, I know I’m in pain, I don’t need anyone to confirm that. I’m not particularly happy about taking lots of painkillers for the pain because it just leads to other issues. So the rheumatoid arthritis bit of it, I’m well supported with it. And there is probably a connection between the two: the rheumatoid arthritis and the fibromyalgia. So, I feel that the support I’m getting with the rheumatoid arthritis is supporting the fibromyalgia, you know, and helping it. But that’s me, my opinion.

It was mainly NHS websites, Arthritis UK, I would just do a fibromyalgia search and just look at whatever came up. The, it was usually the sites that didn’t have too much jargon, the ones that just pinpointed the symptoms.

Did you feel like, because some of the participants told us that, you know, when they’ve went online to look for information that theydifferentiated between what they called dodgy websites and websites they trusted, how do you feel about that?

Well, there’s always those websites that you’ll go onto that give you all this and direct you towards using a certain product. Which, yeah, I think I’m probably guilty of in the past, using stuff because it said this is a miracle cure for whatever, you know? I think I’m a bit more savvy now when it comes to that. But I stuck to the ones that were more factual about illness, I thought if I had the facts then I’d know the right questions to ask when I go to my doctor or my consultant. Because I’m already taking some very serious medication, I don’t want to go down the road of taking something that’s going to have a contrast with anything I’m taking because I value the way I’m feeling now compared to the way I was feeling before. I mean, I canyou know, I’m quite mobile.