Deni

Age at interview: 26

Age at diagnosis: 2

Brief Outline: Deni has juvenile rheumatoid arthritis. She had a very bad experience with medication and doctors when she was 14 years old. She ran away from home at 16 and refused treatment until she came into contact with an Arthritis Care support group when she was 24.

Background: Deni is a full-time university student and volunteer for Arthritis Care. She is white Scottish.

More about me...

At the time of the interview Deni had just turned 26 and was a full-time student at university studying public relations and media. 

 

Deni was diagnosed with juvenile rheumatoid arthritis at the age of 2 but the doctors at the hospital said that she was probably born with it. Deni suffers from swelling, stiffness and pain in her ball and socket joints. Her ankles, knees and wrists were affected at the time of the interview. The pain used to be just in her legs but when she became a teenager it spread to other parts of the body. 

 

As a child Deni took sulfasalazine. When she turned 10 the doctors thought that her arthritis had gone into remission and stopped treating her. Deni did not experience any more problems for another two years. When Deni was 12 she started noticing that her legs were hurting lots after sport. She kept the pain a secret but knew that the arthritis was coming back. When Deni was 14 she went back to hospital to start treatment. The hospital gave her sulfasalazine and methotrexate and this made her very sick and gave her headaches and mouth ulcers. Deni ran away from home when she was 16 and has been living on her own ever since. She refused to take any more prescribed medication for 8 years. She also stopped visiting the hospital and did not tell her friends or employers about the arthritis. She was in lots of pain.   

 

Deni experienced a lot of emotional difficulties as a young adult with arthritis living on her own. She felt anxiety and fear about the future. She also felt sad and lonely living on her own. She became reclusive and would not leave the house for several days at a time. Even though she felt this way she still thought that living on her own was the best option.

 

Two years before she was interviewed Deni turned her life around. She came into contact with Arthritis Care and Joint Potential and now volunteers for them. These charities helped Deni understand her arthritis, gave her confidence and assertiveness and provided a network of other young people with arthritis to engage with. Deni went back to the hospital and is about to start a new type of treatment. She is close to finishing her degree course and now runs a video blog educating others about the realities of living with arthritis. Deni was involved in a direct mail campaign at Christmas and wrote a letter to everyone in her region asking for donations for the charities.

 

When she was 14, Deni stopped taking medication for ten years as a way of "rebelling". She did not visit a rheumatologist clinic during this time.

To be honest, when I first done it I thought I was being like a rebel against the hospital, against the doctor, against the medicine, kind of saying, “You know what, you know, this isn’t going to happen to me. There is nothing wrong with me, you know. So you don’t know what you’re talking about.” But the older I’ve got and the more reflective I’m now looking at it I think it maybe was in a way kind of self-harm because I certainly avoided it and didn’t want anything to do with it, even though I knew what was probably going to happen. I didn’t pay any attention and thought, “Well, I’ll just, you know, its fine. I’ll deal with it later.” And I did put myself through a lot of pain for no reason I think.

 

Was that pain that intentional is also perhaps what I’m?

 

No, like I didn’t sit thinking, “Oh, you know, I’m going to let my arthritis hurt me today.” 

 

Okay.

 

But I think sitting with the pain rather than taking a tablet for it was my way of saying, “Well, you know what? There you are and you’re natural and I’m naturally dealing with you so there you go. I don’t need to take a tablet for it.” But fortunately, the older you get the more you realise that you probably do need to take a tablet for it. It’s all.

 

Deni struggled with sleep when she was in lots of pain. She wrapped up warm in a duvet until she fell asleep. She also napped during the day.

It is a very difficult one to try and explain and I think the only way I can try is by saying that when I’m in a lot of pain and warmth is the best thing for me but you’ve maybe found that loads of people say something warm that kind of calms your body down a bit. So you kind of I’ll curl up in my duvet and try and go to sleep and if I do fall asleep I tend to find that it’s not, you know how there’s like three different levels of sleep and one of them is where you’re kind of, you’re awake and you’re kind of aware of what’s going on but you’re tossing and you’re turning. A lot of my sleep is like that and it’s just because I can’t get my body comfortable enough to lie when I’m trying to get to sleep. So I can feel all the pain and when I move, even just springs in a bed, if you don’t have that properly cushioned, the slightest little imperfection in the mattress will dig into your joint and it makes it ten times worse than what it already is. That’s what happens for me. I toss. I turn. I’m up all night sometimes as well if I can’t get to sleep until maybe about two, three in the morning but I’ll be up for seven because I’ve got things to do. So insomnia, yeah.

 

Can you function okay without the sleep or with the disturbed nights?

 

Not really, no because what’s tending to happen now is that if I’m losing out on all this sleep, I mean you get I get really bad fatigue anyway because of my arthritis. So when, if I haven’t had that much sleep, if I do fall asleep I will sleep for hours as long as nothing disturbs me and I’m like any other person. I’m very crabby if my sleep is disturbed. So I tend to sleep a lot during the day now, a lot more than I used to. My sleep used to be fine. The older I’ve got and the more emotional I’ve got about it, the worse my sleep has got.

 

Deni received a lot of help from her university including a light-weight laptop, a Dictaphone, library assistance, extra time in exams, and taxi expenses if she was struggling to walk.

What about the university? Do you get anything?

 

They help me a lot. I’ve had something called a DSA report so I went along and got assessed and they gave me a laptop that was portable and lightweight so I wouldn’t have to sit at my PC at home every, all like rigid. So I can move about in my flat. They gave me a Dictaphone so I record like lectures without having to write things up. They offered me other things like extra time in exams so you get like an extra half an hour and that also includes time for you to sort of get up and wander about if you have to. I get the use of a computer in an examination so I don’t have to write everything down to save my hands. They offered library assistance and they offer, well, SAS, that’s the students awards agency, they offer paying for taxis so if I can’t get to and from they can put on that for me and pay that for me for the year. I haven’t used all of those things yet but they’re certainly there and in place and if I do want to use them then I can, which I think is fantastic. I missed out on all of that college because I didn’t want to tell anybody what was wrong. So it’s nice in a way, yeah. It’s nice to have that there. 

 

Deni felt shame because she 'can't do things that other people can do', such as shopping and cleaning the house.

Well, you can’t do things that other people can do. Even just like making a cup of tea or lifting the kettle or boiling potatoes like hot or having to do all the housework. Normally, I would be able to get all my housework done in a day and now I have to pace it over four or five days because I can only do one task at a time, like hoovering or lifting the washing in and out and shopping. I can’t carry bags in my hands any more. I have to rest it on my arms, which is then starting to put strain on my elbows, which is now, and, you know, and then the shoulders and they’re both joints that can potentially be affected. So I worry about the way things are changing and how I’m going to have, you know, it’s shameful. It is shameful because you can’t do it for yourself.

Deni refused treatment and did not see a rheumatologist for eight years. She said that she has always associated hospitals with 'negative thoughts'.

Well, my earliest memory of a hospital was, like I said, I remember being on this bed thing with these people looking at me I don’t know that, I’ve got that and I remember also like to the left of me there was a little boy, because I was on a ward, and his name was [name] and he was really sick and he died but he was like my friend like at the time and to this day, I’ve never ever forgotten about that wee boy because I used to put like little pockets up because he was in this like plastic thing that had holes in it. I think it must have been like an incubator type thing but he was older than me and he was smaller than me. He looked like a baby and I used to put puppets up and try and make him laugh and things and I remember him and he was there and then he wasn’t there and that was really weird at the time. Like to this day I use his name for everything, passwords, all my dolls were called [name], my first pets were called [name]. I don’t know, I’ve always remember that wee boy and it kind of scared me because of this big plastic thing and these people looking at me. That was the first kind of thing I had and then there was other occasions when there was a trainee nurse, I think I was about five, six and the doctor asked if she could take my blood and she put the needle through my arm. She done it wrong and she broke my like she burst my vein and oh, it was awful and my mum was so mad at me for screaming and saying, “You’re making a scene. Will you be quiet?” And dragged me out and there I am blood pouring everywhere. This woman has just hurt me and I’m like, “I’m the one that’s, you know, been hurt here and I’m the one that’s getting into trouble.” So I think just I’ve always associated being in hospital and being sick with negative thoughts and me doing something wrong, me not behaving properly and, you know, there being something wrong with me and I don’t want to feel like that, so I just don’t go.

There were lots of things going on in Deni’s life when she was 16 and she ran away from home.

I think there was a whole manner of things that kind of built up. I was trying my best to get through my exams and my hands swelled up like a balloon and I have one exam left and it was the most important one for me, it was my media studies and I’d already decided before I’d take these exams, that’s the way I wanted to go and my hand was like a balloon and I didn’t know what to do and I just kind of went and showed someone at the school office and everyone was fussing around me and, “Why didn’t you tell us sooner?” You know, “Why didn’t you tell us you had this condition?” And shouting at me about it and I was just kind of sitting there with this big hand going, “Well, I’ve told you now I guess.” My little brother didn’t really understand and we were sharing a room at the time and you know, I was sixteen and he was fifteen and this seemed a bit awkward that we were still sharing a room. Boys, friends not understanding what was going on and me not really understanding what was going on. I just had these bad tablets and the bad reaction and mum was really pushing me to go back to the hospital and, you know, I ran, I didn’t really think it through. I just ran.

 

How long were you gone for?

 

I haven’t ever been back home.

 

Okay.

 

I’m still in contact with my family and we have a very good relationship. I never fell out of contact with them but I’ve never returned home. I’ve always lived on my own since. So, ten years.

 

Have you changed as a person over those ten years?

 

Oh, yeah. 

 

In what ways?

 

I’ve grown up a bit. I became very independent. I think when I lived at home, as much as I didn’t like having to do it, asking for help from my mum was okay. I could do that and she was always there but as I’ve lived on my own and got older, asking for help is a massive issue for me. I don’t like doing it. I don’t want to have to do it and it makes me feel like I’m failing if I have to ask for help.

 

Deni gets very nervous around doctors in hospital and would like to speak to her doctors outside the hospital environment.

It’s lit a little fire in me just hearing that so, you know, like to go away for a weekend with a rheumatologist to have that that resource there, just to be able to ask a question without it being as formal as being in a hospital, maybe that would, especially for me. Being inside a hospital freaks me out and I think that’s because of being in a hospital when I was so young and not understanding what was going on. It’s really, became something quite bad for me to have to deal with. So I think from a younger age, to have that rheumatologist just speaking to you like you’re a normal person and giving out information would have helped me I think. Out of the hospital environment, I think that’s a very clever idea.

Deni 'hated' sulfasalazine. She didn't like the taste and battled with her mum over it. She experienced bad side effects without reducing her symptoms.

And was it sulfasalazine was the first medication you took?

 

Sulfasalazine, yeah.

 

Sulfasalazine. How did you get on with that?

 

Oh, I hated it. It was liquid. It was like an orange liquid and I had to take it twice a day and I gave my mum so much hassle, kicking, screaming, running, hiding, spitting it out, pretending I was choking. Every time, every day until it stopped, everyday yeah.

 

What was your problem with it, can I ask?

 

I didn’t want to take it. It tasted disgusting. I didn’t understand why I had to take it. I knew I wasn’t feeling very well but I didn’t really know why. I didn’t know what was going on. My mum used to get quite frustrated with me naturally, because she had to give me it but I didn’t want to take it. So we, it was it was like a kind of battle between the two of us, that’s what it became and I’ve struggled with medication ever since.

 

I got bad headaches, nausea, stomach problems, mouth ulcers, vomiting, oh, and it just made my arthritis worse. It didn’t take any of the side-effects away. It didn’t take any of the symptoms away. It just made it more inflamed. My temperature, just it wasn’t working. 

 

Deni kept her arthritis a secret from most people for many years. She then decided to share her story with the world by blogging for Arthritis Care.

It was a big secret up until December last year. I mean I told my closest friends and that’s only because I trusted them enough to tell them. I’ve known them for a really long time. I’d met them at college so they were quite shocked to find out that all those years of partying, I was actually sick. I’m generally now I’m quite open about it. I mean, like I said, I didn’t tell anyone anything and then all of a sudden, I became the face of this direct mail campaign for Arthritis Care and that story is everywhere now and I’m doing a blog about living with arthritis. 

 

So I’ve gone from being silent about it to being quite public about it. I’m not sure where the line is of how much I’m going to keep private and how much I don’t any more.

 

It’s all happening quite fast. New people, I think I kind of tell them that I’m a volunteer for Arthritis Care. If they ask me if I have arthritis I kind of say, yes, but I don’t go into huge detail, kind of direct them to the blog, that’s really about it. But my closest friends, I’ll talk in depth with them if they want to.

 

Okay. It’s a bit of a radical thing, isn’t it, to go from keeping it a secret to…

 

I know.

 

…telling the world?

 

I’m not really sure if it’s the best thing to be doing and then I remind myself that it is because if I can help one person, one young person, not end up being so scared and vulnerable and feeling so lonely and ashamed as I have, then that would be the best thing. It would make me feel a lot better.