Lu

Age at interview: 26

Age at diagnosis: 13

Brief Outline:

Lu has polyarticular juvenile idiopathic arthritis with a positive rheumatoid factor. She experiences a lot of pain and swelling. She is determined to not let the arthritis get in the way of her dreams and has travelled the world and graduated with two university degrees.

Background:

Lu is a recruitment consultant. She is white British.

More about me...

Lu is a 26 year old recruitment consultant. When she was 13 years old she was diagnosed with polyarticular juvenile idiopathic arthritis with a positive rheumatoid factor. Lu’s problems began after she fell down the stairs. She hurt her fingers in the fall. The swelling did not go down so her parents took her to accident and emergency. An x-ray showed that Lu did not break any bones. The swelling in Lu’s fingers did not go down for a month. Lu’s GP ordered a lot of blood tests to explore what was wrong and one test revealed that she was rheumatoid factor positive. Lu was referred to a consultant rheumatologist at her local hospital. Because the consultant did not work with young people he referred Lu to a children’s hospital in a nearby city. 

 

Lu refused to go into hospital as an in-patient because she was afraid of what was going to happen to her. Not long before she was diagnosed Lu’s granddad died and she was still coming to terms with the loss. Lu also refused to take her medication because she did not want to experience any side effects, which may have included hair loss and sickness. Lu’s condition deteriorated and she became very ill. It was at this point that Lu realised that it was important to take the medication and she started to listen to the doctor’s advice.

 

As she got older Lu tried different medications to help manage her arthritis and had varying levels of success. She was in a lot of pain during her A-Levels and during her undergraduate degree. However, she was determined not to let the pain get in the way of her achievements and worked hard to achieve high grades and train with her university swim team. By the time she graduated from university her arthritis was sufficiently under control and she was able to travel the world. Her consultant gave her enough medication to last for four months in tablet form. Lu then managed to purchase further medications when she was abroad. She had blood tests abroad and the results were sent home to her consultant. 

 

Lu returned to the UK and studied for a master’s degree. Her arthritis flared up again and she initially struggled to keep up. Her consultant put her on Enbrel (etanercept) injections. These injections worked very well and Lu managed to graduate for a second time with high grades and started working full-time in a competitive job. She also managed to travel to Australia and had her medication stored in a fridge on the plane. 

 

Lu went to A&E after falling down the stairs. Her finger was swollen but not broken. The nurse...

I was really, really sporty when I was a youngster which is apparently how my arthritis kind of kept at bay and then when I was 13 years old I was running out of my house going to swimming club, fell down the stairs and bashed my fingers which wasn’t you know, you know it was quite typical for me I was always sort of you know doing one thing or another. Had numerous sports injuries. And then I noticed that the swelling just didn’t seem to go down. So I got taken into A&E by my lovely parents who, this was probably about the fourth trip in a month, ‘cos I was sort of dislocating shoulders or you know breaking feet or something like that, really randomly.

 

So yeah I got taken to A&E and had x-rays and they noticed that there wasn’t sort of any potential breakages there, and I remember the nurse saying to my Mum, “There’s like a one in a million chance that it could be arthritis.” And my Mum for some reason just kind of clocked onto that. And when the swelling didn’t go down a month later I got taken to my GP who then sent me off for a load, you know a load of blood tests, and just to sort of get rid of any you know possibilities and I remember sitting there thinking, “Oh my goodness, what am I being tested for?” Because there were some really horrible diseases. And then going back and finding out that my sort of rheumatoid factor had come back positive.

 

And the process from there was just really quick. I was sort of out of the GP surgery into a local hospital and then because the local hospital didn’t really specialise for youngsters I got moved into one of the sort of the leading hospitals in the world for sort of treatment and analysis and tests and diagnosis really.

 

Lu knew what each test was for because her doctors and parents told her. She said that she never found the tests scary.

I just knew the x-rays were obviously to assess maybe the damage in my joints. So to see which areas had been affected. Like I knew the blood tests were to check whether the medication was having you know an effect or not on what my sort of you know rheumatoid factor levels were, if my red blood cell count was high, if my white blood cell count was okay, if my liver was, you know my liver was fine. I knew all that and I knew the bone scan was to sort of, I think it was to check my density, my bone density.

 

So yeah but that was obviously because I’d had someone explain it, and I obviously asked my parents questions, you know, “Why am I? Why am I getting this done?” or something like that, but you just get into the routine of it, like I’m so used to having blood tests every six weeks, or six to eight weeks now I don’t even think anything about it. I’m so used to having an x-ray that I don’t think anything of that as well. So I didn’t ever find it really sort of scary 

 

Lu did not understand what arthritis was and was afraid she might die from it. When she was diagnosed she felt like she lost control over part of her life.

I think because I didn’t really understand for a while what the arthritis was, and when I got of my sort of blood tests results back and the look on my dad’s face, I thought, “Oh, this is not good news.” And I remember the first question I asked was, “Am I going to die from this?” Because I just didn’t have any understanding or a clue what it was, or what I was going to do or anything like that.

Lu always has a list of questions to ask when she sees her consultant. She also tries to take somebody along with her too. This helps Lu get the most out of her consultations.

Did you or your parents feel confident in asking questions during the consultations?

 

Yeah. I felt confident. I’d always have a list of questions, and we’d make it a bit of a joke, you know it would be like, “Oh the [name] family with the list of questions.” But I think it’s important to ask the questions, and I always, even now try and take someone with me because I feel like I’ll come out and just forget the questions, or you sort of digress from you know the point or something like that, so I always go in with a list of questions. I think that’s really something that I would definitely recommend. Knowing what you want to get out of your appointment, and you know sort of quizzing the consultant as much as possible, asking what sort of the other options are, that’s something I always do as well. But that’s something that’s taken you know what 13 years now to sort of do, I didn’t feel confident doing that at the beginning at all. The same sort of you know with recently that I’ll happily go in and ask them, you know, “Can I do this?” or “Can I do that?” Or “If I move abroad you know what are the options for medication or treatment abroad?” Stuff like that.

 

So as an experienced patient the one thing that you would recommend people doing, well just from diagnosis is take in questions?

 

Yeah.

 

So to have that strategy to begin with?

 

Ask as many questions so that you understand what you’re going to be going through. And also take in a list of questions, and take someone in for support. Because if you don’t ask the question they can always ask the question for you. And you’ve, you also, you come out of the consulting room and you’re thinking, “How often am I supposed to be having a blood test?” or “What did they say? I should be increasing my medication to?” So always write everything down and then if you’ve got someone with you as well you’ve got that person to be like, “They said this? Or they said that?” So I definitely recommend that.

 

Lu put on weight when she took steroid tablets. Once she stopped taking steroids she had to think about when to eat and how much.

Because I’d been on steroids for quite a while, I initially went on them just to sort of get me through my GCSEs, and so about two and a half, three years later I was still on them, no four years later, four? Yeah about four years later I was still on them. 

 

So because I’d just ballooned out and put on weight, it was literally like you could sort of prick your skin with a pin and you felt like you were going to go pop. I tried to get off them which obviously took a while, and you know there were negative side effects of that. But once I had come off them I’d obviously gone from so it was making you eat, they really increase your appetite, so I used to eat you know a meal big enough for two, half an hour later I’d be really hungry. I just had no control really over what I was eating or my appetite. And as soon as I came off them I didn’t know what my appetite should be, or what it was. 

 

So I remember thinking, you know I’d get up in the morning and I’d have you know my Weetabix, and then half an hour later thinking, “Well normally I’d be eating something else right now, but I don’t actually feel like I need to.” And you know three meals a day seemed to really be something of a distant memory. Although it took a long while for me to know what, you know what my appetite should be and what it was. And I just remember like you know my friends were just like, “Oh my goodness, you used to eat so much and now you hardly eat anything.” And I was like “But yeah, I think that’s just relative to me.” So definitely took a good like say seven or eight months to get it back to normal because obviously I eat, you know you lose all the steroid sort of puffiness as well, so you go through quite a lot of changes, but yeah, that’s quite, that was quite interesting.

 

Lu suffered from 'bad fatigue' but would still work long hours and go out at the weekends. When she had bad flare-ups she had to slow down and sleep lots.

It doesn’t help that you get such bad fatigue as well. I get really really bad fatigue that you, when you’re tired, when you’re not feeling well you’re gonna feel you know pretty low. I think you’ve just got to manage your expectations with it, and I think that’s definitely something that I got taught when I was, you know, going through everything as a kid just to manage the way I feel. But it is just, it’s just normal, not abnormal I’m sure.

 

Yeah the fatigue, I mean how does it impact on your life?

 

I feel like I’m sort of a bit robotic as in I can go for a long period of working quite long hours, especially at the moment, going out a lot. And then going out at weekends or going away for a weekend or doing something like that and then it’ll suddenly just get to a week, which I’m on at the moment actually, where I’ll just be hit with a really bad flare-up and then you just feel exhausted all the time. You know when I get out of bed you just, you can’t explain, it’s like you’ve got some sleeping disorder where you just want to sleep all the time. So yeah it’s pretty bad.

 

Lu discovered that there was a 'massive pressure' for people to drink at university. She felt 'lucky' to have friends that kept an eye on her when there was alcohol around.

But maybe that’s something that I’m just really sort of lucky to have. Now it’s a bit different at work because I’ve quite recently started, there’s only like one person that knows I can’t drink, so he’s constantly on the lookout now, so he’ll, when he’s pouring my drink he’ll just pour something that we pass off as vodka and coke, but it’s not, it’s just coke. Or you know I’ll get to my third drink and he’ll be like, “Okay, have you had enough?” But yeah I’m lucky in that sense. But yeah there is a massive stigma, there’s a massive pressure, definitely at university, even at school, later on at school, even now there’s a pressure to drink. But you’ve just got to be strong willed enough to be like, “Well look, I’m having you know, no I’m not drinking tonight,” or, “I’m gonna have two, but it doesn’t mean that I can’t have a good time.”Or that I’m any less of a, you know a better person for it. ‘Cos you know if you’re still fun then what’s, what’s the issue really?

Lu went to see somebody at her university about feeling unhappy. She realised that it's normal to sometimes feel down and upset.

No I remember feeling, having a really, really bad flare up at university, really bad flare up it was because I used to go out a lot, and I know that was my own fault. But I remember just feeling rubbish about it and just feeling you know not, I wasn’t happy, I was just in so much pain that I couldn’t, I knew that it’s like it, I always know that it lasts a period of time like I always call my mum and just like I’m not very happy and I’ll have a day of just crying, and that’s nothing to do with anything but the arthritis, it’s just ‘cos I’m in so much pain it’s like the frustration of it. And I remember going to see somebody at university actually and I walked in and I said I’m, she said you know, “Why are you here?” and I said, “I’m on a really bad flare-up and I just don’t feel happy,” and she went, “To be honest I wouldn’t, I’m not surprised. So like there’s nothing wrong with you.” And I was like, “Okay then,” and that was it. And since then I was just like I never needed to see anyone since.

 

Okay.

 

Yeah.

 

That’s interesting.

 

Yeah.

 

A bit of a short session then?

 

Yeah it was really short, it was like five minutes.

 

Did it actually have an impact; I mean was it a positive thing to have it so short?

 

Yeah it was because I thought do you know what, like I am, the way I’m feeling it’s totally normal. It doesn’t help that you get such bad fatigue as well. I get really, really bad fatigue, that you, when you’re tired, when you’re not feeling well you’re gonna feel you know pretty low. I think you’ve just got to manage your expectations with it, and I think that’s definitely something that I got taught when I was, you know, going through everything as a kid just to manage the way I feel. But it is just, it’s just normal, not abnormal I’m sure.

 

Lu found it 'straightforward' finding a job after university. She didn't tell anyone that she had arthritis when she applied for the job and only told her manager when she started working.

Did you find it a problem finding a job in the first place?

 

No.

 

It was quite straightforward?

 

Yes, straightforward for me finding a job, I think you’ve just got to be in the mind-set for it. You know there’s no reason why you can’t be working at all. There’s no reason why you can’t have you know a life that everyone else has, everyone’s going to have issues or things that are going to change, or they’re going to go through things at some point in their life, so like why should you be any different really?

 

But I think yeah I know how it feels sort of going, you know ticking “Do you have a disability?” No I just, I don’t even tick it to be honest. Because most people you know that I know they’re just like if we didn’t know them we wouldn’t realise there was something wrong. So yeah I think…

 

Do your employers know now?

 

Yeah just one of them, my in my team, my team manager and one of my friends as well.

 

Are they; is your manager okay with it? Is she supportive, is he supportive?

 

And I don’t think they have an understanding of what it entails at all. Like at school no-one knew what it entailed. I think there’s some education needed there definitely. Actually massively but yeah you know if I’m popping the painkillers then he’s known why, not that I’m just addicted to them.

 

Or if I need to get up ‘cos I’m getting stiff or I’m, well I get told to stretch a lot apparently, so I always get pulled up on that, and I’m just like, “Leave me alone.”

 

Lu discovered that there was a “massive pressure” for people to drink at university. She felt ...

But maybe that’s something that I’m just really sort of lucky to have. Now it’s a bit different at work because I’ve quite recently started, there’s only like one person that knows I can’t drink, so he’s constantly on the lookout now, so he’ll, when he’s pouring my drink he’ll just pour something that we pass off as vodka and coke, but it’s not, it’s just coke. Or you know I’ll get to my third drink and he’ll be like, “Okay, have you had enough?” But yeah I’m lucky in that sense. But yeah there is a massive stigma, there’s a massive pressure, definitely at university, even at school, later on at school, even now there’s a pressure to drink. But you’ve just got to be strong willed enough to be like, “Well look, I’m having you know, no I’m not drinking tonight,” or, “I’m gonna have two, but it doesn’t mean that I can’t have a good time.”Or that I’m any less of a, you know a better person for it. ‘Cos you know if you’re still fun then what’s, what’s the issue really?

Lu is scared of getting into a relationship but says it would be nice if somebody could look after her. She's insecure about boyfriends seeing medication beside her bed and doesn't like people watching while she injects herself.

I’d say that I’m more scared of getting into a relationship.

 

Okay.

 

And trusting because, oh I don’t know. I think you’ve got to always think, not am I am a burden but is, you know it shouldn’t be a lot to take on but maybe it is because you can be really well for a couple of weeks and then you might just have a flare-up, no matter how well controlled it is and then you don’t want to go out at the weekend, you just want to sleep. And you kind of want someone to look after you a little bit, even though you know you might not need that. That’s why even now at sort of 26 if I’m really feeling rubbish I’ll go home to my parents. And I’ve got no qualms in doing that, and I’ll just go and lie on the sofa for like two days to get better. 

 

But I think maybe we perceive that to be weird and people that have it perceive that to be something way more than it really is. Like I think maybe you make, may make more through insecurities, you know having your sort of drugs out there all by the bed, like I don’t really like people seeing that, or you know having to go off into another room to inject myself. That is a lot for someone to understand. So to be honest I’m quite lucky like the relationships I’ve had have been with people I’ve previously known, but I think introducing that to someone new that’s something I hold off from for a while until I can really trust them. So yeah.

 

Lu had 'really big insecurities' growing up. Arthritis affected the appearance of her joints whilst medications caused weight gain and hair loss.

I definitely think the joint flare ups affect me because you know I remember having massive nodules on my wrists and I hated it, you know. If I’m on a flare up like I may not, I’ll just constantly wear jeans out because I don’t want anyone seeing my knees or my ankles or my swollen joints. So I’m, so I’m very aware of that you know. But everything else I guess, no, hair loss I had a lot of with methotrexate, so my hair got really thin. 

 

But you know once you’re gonna, when you get better things like that are, you know like the hairs gonna grow back or you know you can get your weight back to how it was, it’s just a temporary sort of glitch. And the only long term thing is obviously, yeah I don’t like my fingers, you know I really don’t like all the joint damage or I don’t like my feet, but you know you’ve just got to get on with it I think, you really have.

 

But yeah I definitely, you have really, really big insecurities and I think it definitely knocked my confidence massively when I was you know growing up. And it took a long time to get me that back and that’s partly the reason I went travelling. ‘Cos when I went travelling I just wanted to, I went, my friends just, so I went, I went a someone else and came back as someone completely different with a lot more confidence. Because it’s just carefree, you don’t care what other people think, plus no-one knows your background or the history and I think that really helps.

 

Trust is built up when people see the same consultant over time.

I remember seeing different consultants which I found really hard, because as a young person you’ve got to trust someone and it’s really hard to trust someone when you’re in and out with different consultants. You build up a relationship but then you, you know that consultant might not be there the next time that you’re there, and it’s just how much does that other consultant know about you. Not your diagnosis, but as you as an individual, you know? Do they know that you’re, you know the reason you’re not exercising is not because you’re lazy but it’s because you physically can’t do it? Do they know that you’re as much; you know more pain than you were last time? Because you know what can a note sort of transfer into someone’s mind. They were amazing consultants but I think that, that was, I found that quite hard, whereas I also got introduced to my consultant in my local area because obviously he’d be taking over when I think I was sort of like 19 or 20 (they kept me on for quite a while) when I transferred across, and I was lucky that I’d been seeing him every six months, so he was in constant sort of liaison, knowing what was going on at the other hospital. So that was good, that was a good handover sort of for the period that they done that.