Emma

Age at interview: 23

Age at diagnosis: 18

Brief Outline:

Emma was diagnosed with seropositive rheumatoid arthritis when she was 18 years old. Despite being in pain, Emma has graduated with two university degrees and spent a summer in the USA. She is also very sporty and enjoys street running and spinning classes.

Background:

Emma is a full time PhD student in the dermatological sciences. She is white British.

More about me...

Emma is a PhD student in the biomedical sciences. She was diagnosed with seropositive rheumatoid arthritis when she was 18 years old. Emma became ill when she was on holiday shortly after receiving her A-Level results. When she returned to the UK she was hospitalised because she was in so much pain and struggled to care for herself.  The doctors did not know if Emma would get better so she cancelled her place at university. Emma became depressed and felt lonely because her friends went to university. She even contemplated suicide when the pain was at its worse. Life started to get easier once the doctors diagnosed Emma and found medications that relieved the pain. She was given steroid infusions and methotrexate. Emma managed to find a part-time job and attended university in the following year. At the time of the interview Emma was taking Enbrel (etanercept) and methotrexate to help manage her arthritis. She has graduated with two university degrees and even spent a summer in the United States of America. She is a fitness enthusiast and enjoys running and spinning classes. Her success with university, travelling and exercise is partly due to the medications, and partly due to her determination to not let the pain and fatigue get in the way of her goals.

Emma knew which medications she wanted to take and which to avoid. She was insistent with her doctor and felt that this 'irritated' him. Her arthritis has been 'on an even keel' since taking her preferred medication.

I think. We see eye to eye but we, like I say I'm really pushy so I've always pushed for things and I've tried to push it like and he always has to control me because you have to be on like, you know, before you can move on with stuff you have to be on a certain drug for a certain amount of time and I've always been like, 'Well this is it, it's been three months, two days, this hour, right now, give me the next thing because this is obviously doing anything.' So it's always had to; maybe it's more parent/child or parent/teenager that's probably the best way to put it, you know, I'm stroppy and I'm going, 'Well it's not working, I want to go to university, I feel like crap,' and he's like, 'Well you've got to give it time, this takes time, body takes time,' and it's like, 'mmm', you know, 'I want this now,' kind of, you know a little bit like a child

 

It may not be the case for you though that this was, it may be that your discussion was more open because you were aware of four different, you know, medications or you'd; the difference between biologics, Anti-TNF's, the DMARDs and you listed them there. So were you in this position where you could negotiate or become almost a partner in decision making with your treatment?

 

Yes definitely.

 

Could you explain how that happened and what is what like then?

 

So they tell you, well I'd, so I went on methotrexate and I was put on a really low dose because you've got like your body of stuff like that straight away. And then so obviously started collecting leaflets and stuff and it was a, I knew the kind of, I'd made myself read and I understood what DMARD meant eventually and understood the kind of groups of drugs within that and when it came to kind of let's up the methotrexate, let's, you know. And I was happy to keep going because you know, you need to get to a certain point with it and give it a good three months before you're supposedly supposed to see stuff and it was getting to the point where I wasn't seeing anything and I was like, 'Well, you know, there's this and then there's this and then there's that, which one do you want to put me on?' and it was more of a, at first because I was seeing, I was just, you know, that other nurse to start with and she was a bit reluctant and she was like, 'You need to stay on the methotrexate,' and I was like, 'I'm not really happy,' you know. All well and good you're saying that this will work. Cool but you can put other things with it. It's one of those drugs, it's designed to be used with other stuff so I basically ended up; I was lucky enough to have my consultant appointments quite close together at that time because obviously it was so early on in the diagnosis and that was when I mentioned to the consultant that you know, ‘There's other drugs, give me other drugs,' you know trying to worry him with the amount of painkillers I was chewing on a day and it was like, 'OK well if this is really how much you're taking, this is what's going on and oh OK so you have had six steroid injections in this amount of time, oh god.' It was a, 'Yes let's start,' and then from there it's always; I wouldn't say I'd been in control because the biologics, I didn't really know much about them if I have to be honest and it was only when they offered them and they started trying to get the money for them that I understood what they were and that was kind of my first year of uni and I was a lonely first year and we hadn't really done much immunology so I didn't understand all the stuff. And I was little bit, I was quite apprehensive ongoing, of actually going on those drugs because they were, well it was as NICE were overturning the rules for them on clinical trials because they'd been so effective that they decided that they were going to stop trials shortly and start actually issuing them as dru

Nowadays Emma watches how much she drinks but as a fresher at university she often got very drunk.

I like my gin OK and I'm not, shouldn't be so pleased to like gin. No I don't know, some consultants I've spoken to are very stiff and very much, 'don’t drink, don't do this, don't do that, yeah. If you can try and cut out caffeine,' all this kind of stuff, you know, 'Try and realise everything,' and there's other people who are like, 'Well actually you be sensible and actually if you just stick to government guide lines,' and because I've never been on the maximum amount of methotrexate anyway, I've, you know, I'd have to be drinking an awful lot to cause irrefutable damage. So I try not to drink too much and like to be honest I mean, I say I drink but for me saying I drink, it's a couple of nights in a pub a week where I'll have a couple of pints and then I'll tend to go to the diet coke. OK admittedly, first year I was a Fresher, I got off my face, you know, four times a week you know, but because I was so disinclined to tell people about how much I've had, you know, problems with my arthritis and people just stare at you when you tell them and they look at you blankly like, 'Why would you take these drugs then?' you know, I just kind of got on with it and maybe I, maybe, you know, did sacrifice my health then but my blood; I always went for my regular blood tests, I was very good, you know, try and have a few nights off a week but as I've gotten older and as you become a boring post-graduate student you don't have much time to be drinking anyway so; my liver should have recovered by now. But yes I had to be a fresher, everyone's got to be a fresher, you come to university for a reason, don’t you?

Emma doesn't feel she needs a blue badge because her arthritis affects her elbows more than her legs. She can struggle carrying shopping so tends to buy just what she needs or asks a friend to help.

And that's the only help I've ever wanted to have because I don't need money for pain, that's how I've always saw it. Like, you know, it hasn't stopped me from getting on with my life and getting a bus or walking to work and maybe I could have let it go that way and taken all the benefits in the world but I'm far too honest for that and you know, and I just think for me it's taken a while to get over it as well. Like I'm not going to go and get a blue badge for my car because oh I've got a little bit of arthritis in two elbows. I mean that's not really affecting my parking now is it? Because I can park far away, I can still walk. The only thing that I have trouble with is I have to ask friends to come and carry my shopping some days or I can't do big shops but I live on my own so it doesn't, you know, you live to your needs. So yeah I'm quite, yeah I never used to be so open about it and I probably, if, given this, you know, three years ago I probably would have just sat here and gone, 'Don't want to answer that, don't want to answer that,' but now it's kind of like, 'Well actually, you know, people might benefit from having kind of an open and honest, you know, it's shit, it hurts, you get on with it and if you don't get on with it, it gets even worse.' So yeah. And I'm two degrees later, about to hopefully finish a third in four years' time. A first and a distinction may I add, big head out. The first in my undergrad and the distinction for my Masters and that takes an awful lot of work.

People who feel scared are reassured by friendly doctors and nurses.

Yeah I think it should especially if a patient's young. I don't know about; it would probably feel quite patronising if you're eighteen and you know, things like that but when you're eighteen and you're in a hospital and you're scared because you don't know where, you know, you're going be walking like this, you know, shuffling eighty year old at you know, twenty seven. 'Oh my god,' you know, it's kind of like, 'aaah,' you know. I think you need a level of friendship because otherwise well I would panic and I've; there were moments, lots of moments of panic so I encourage it. I don't like the, you know, I've, there are, there are other nurses that I've had appointments with when said nurse hasn't been around, it's not been as good and I've not felt like I've got anything from it. And I like to go to an appointment and feel, well maybe not some at the moment because my arthritis is on like an even keel and there's not really much to say, but when things were bad it was, I preferred having something to aim for like more, we’ll do more hydrotherapy or we'll do this or maybe have you thought about another joint injection as much as I hate them and they're bloody awful I don't recommend them to anyone but I do recommend them to anyone. Yeah it's always nice to have the kind of friend, a friendly ear to make you, you less scared. Because you know a rheumatology ward is not like going to a children's ward. You know it's maybe, you know, there's rheumatology clinics for people that are under eighteen and you know and they're classed as a child but when you're eighteen the NHS instantly sees you as an adult so you have to go to you know, scary wards you know and I got admitted to hospital last year for a kidney infection and I ended up on you know, a ward full of old people because you know, they don't group eighteen to twenty four year olds together. So yes it's quite, yeah, there's not really that kind middle of the road gap for young people in the NHS so it's nice to have nurses and it helps that this nurse is quite young and she's, she's got teenagers herself and I think she's quite relatable and that you know, she, she'd worry about her kids if they were, you know, going through the same thing and it's nice that she's got a level of understanding.

People with arthritis have ambitions like everyone else. Keep these in mind when you treat them.

So yeah it was mainly because my usual nurse wasn't around; well it's just one nurse that I don't have a great relationship with. I've never really seen eye to eye, I don't know, it's not, I don't think it's seeing eye to eye I think it's just, I don't know maybe she; tried to explain to her one day how, well actually, I think, I shouldn't really say that; this nurse started off being my original nurse but when I started being quite insistent about that I was going to go to university and I was going to do this and I'd seen that other nurse a couple of, the one that I've got a really good relationship with, a couple of times and she was one of the nurses that was helping me with my treatment and I was actually seeing her on the unit when I was getting my drugs, not actually as a, you know, a consulting nurse at the time. It ended up kind of being switched because original nurse, or scary nurse as I like to call her, we just never saw eye to eye and I was trying to, trying to explain kind of the frustration of, 'I want to go to university, this is where I am now, unable to move, this is where I want to be at least to leave where, my home.' I didn't want to be at university close to home, that was not what I wanted and that's what she wanted me to have all, you know, it felt like that's what, 'Why don't you stay closer to home, we'll be able to monitor your treatment closer,' kind of trying to, maybe she was being more realistic trying to slow me down and that you know, 'this treatment's going to take forever, time is, you know, you've got lots of time, you're eighteen, we'll be able to sort it by the time you're thirty,' that kind of thing. 

 

And it's like, 'Well no actually I'm eighteen, I want it sorted by nineteen,' you know and it kind of ended up being that my appointments not through me requesting other nurse started when I put my card in because they kind of put you with anyone who's free on the days. I started being seen by the other nurse a lot more and then now, well and luckily when I got put on the biological drugs, so the Humira (adalimumab), my current nurse was appointed like the nurse to do with those drugs so I have to go and see her now because she's in charge of that clinic for the biological drugs so I, that means I get to see nice nurse all the time because I'm on the nice drugs whereas scary nurse, well I don't see scary nurse anymore. I don't think I've seen scary nurse in two years now. I think she still works there but….she's just very not understanding I don't think and it just yeah, quite belittling really. Like you know, not, time wasn't her essence whereas I think for me time was the essence, it was the all of a sudden my life has stopped, it's quite big. Quite a big thing, there's no counselling involved, you're dealing with this yourself. You've got the rheumatology nurses and doctors to kind of deal with the treatment and get you kind of trying to function as normal but there's no emotional buffer so and it's nice to have a nurse that you have a good relationship with because it kind of acts as the emotional buffer. I can scream, I can shout, I can cry and tell her I'm pissed off with my joints and she'll understand whereas the other nurse probably just would have gone, 'she's crying in my office, someone take her out.' So …that's it really.