So do you feel as though you know you’ve been involved in the management of your RA?
Probably not as much, thinking about it now, as a 29-year-old mature woman, rather than a as a five year old child, probably not as much as, as I would have liked. It does tend, thinking about experiences and as I say, I’m looking back so it might be a bit off but sort of a, it’s sort of a one-way street almost. You sit down in front of them. They throw a lot of drugs and treatment at you, you know. They say have this, have that. Whilst I’m sure they wouldn’t any objection to you asking any number of questions. I think it’s a only, only relatively recently and not even now for a lot of patients that you feel that it’s your duty to be involved more, to ask more questions.
I think that is only a relatively recent thing that maybe ten and twenty years ago, that’s what you were expected to do. You go and you sit there and you say, “I’m sick make me better”. They give you something and they make you better, that’s it. You don’t ask questions. You don’t interfere. You just let them do their thing and I think that probably when I was growing up that’s probably what we did, you know. We let them guide us, which is you know, not necessarily a bad thing ‘cos we you know, they know about these things and you don’t, in the most basic terms.
But as you get older, as you’ve had the illness a long time, you learn about how your body reacts to certain things or deals with certain things. And then after you’ve had it a certain number of years as I have, you do then begin to answer back a bit more, to ask more questions. Also of course the other thing is that, you know, you sit there and they say things to you. They say, “Take this drug or have this treatment, or have this surgery” and you don’t think about half the things you want to say until you’re back home. And you think, ‘Oh I wish I’d said that’ and ‘I wished I’d asked him that’. And with the Internet, which is a great thing, you can go on line and find out about of things that, you know, you could have asked the doctor.
I know they say you should write a list of questions but I’ve never really done that. But no I think definitely it’s only really very recently and certainly with a lot of the women that I’ve seen on the ward, other patients, when the doctor comes on his rounds in the morning and speaks to them, they lie there and the doctor speaks to them and then the doctor goes away again. You know they don’t, it might be because they don’t have anything to ask him. But I, generally speaking he’ll always spend longer with me because I’ll always say, “Well what’s this gonna do? How long is this gonna take? What affect with this have?“ It gives you more experience I suppose as you get older and you’ve got 24 years of experience so, it’s a good thing on the one hand and a bad thing on the other I suppose.