Sonia

Age at interview: 22

Age at diagnosis: 20

Brief Outline:

At the time of the interview Sonia was a full-time university student.

Background:

At the time of the interview Sonia was a full-time university student. She is white British.

More about me...

Sonia is a third year university student. She was diagnosed with ankylosing spondylitis (AS) two years before the interview. Sonia remembers experiencing pain growing up and strongly suspects that the AS was the cause. She had pain in her lower back, bum and legs. Sometimes she would wake up in pain or would feel a painful “click” during exercise. She would cry because the pain was so bad and struggled to walk properly or sit down. The doctors usually said that Sonia was experiencing sport injuries or growing pains and was prescribe ibuprofen.

 

Sonia’s condition deteriorated at university. In her first year she would wake up in pain. In order to get ready for lecturers she would have to roll off the bed and crawl around on the floor because she could not stand. When Sonia was in her second year the pain got worse. She also had problems breathing and felt like her ribs were “on fire”. She was unable to twist her torso and found the smallest of movements painful. She became depressed and contemplated suicide. Her friend heard her crying when he walked past her bedroom and took her to see doctor. The doctor gave Sonia amitriptyline to help her sleep, emailed the university nurse in order to postpone her exams and referred her to a consultant. The consultant first diagnosed Sonia with undifferentiated arthritis. After further tests this diagnosis was changed to AS. Within 6 months the consultant prescribed Humira (adalimumab) injections once a fortnight. Sonia described the medication as being “amazing, like a complete life changer”. She now experiences less pain, enjoys more mobility and even competes in university athletics tournaments.

 

It took several years for Sonia to be diagnosed with ankylosing spondylitis. During this time the pain spread from her ankle to her bum, legs and lower back.

I’m 22, and I’ve got ankylosing spondylitis, and I was diagnosed with that about two years ago. I wasn’t really sure what triggered it off, but I remember when I was 11 years old and in my last year of primary school, I was playing basketball in PE and I jumped down and as I landed my left leg just buckled underneath me and I didn’t think anything of it, I thought I probably like ricked my ankle or something. 

 

But I got home and I couldn’t sit down, I couldn’t lie down, I couldn’t stand, everything that I did it was so painful. And I was crying my eyes out and my parents didn’t know what to do with me. I didn’t know where to stand, what to do with myself. And then they took me to casualty and they had no idea what was wrong. They x-rayed me and said there’s no breaks, they said there’s no sprain, we don’t know what’s going on, we’re going to give you some ibuprofen, and it kept coming back like over the years I’d wake up one morning and the pain would be there, or I’d be I don’t know doing a sit up or something, and I’d just hear a click and that was it, it was just, I knew then that for the next week or so I’d be in a lot of pain.

 

And for a while I thought it was growing pains because when I did get it felt like one leg was longer than the other, and I was like walking with a limp because I just couldn’t put both legs on the same level, it just didn’t work.

 

And I was getting pains in like my buttocks, like all down the back of my legs and in my lower back, and I went to a Chiropractor in the end and the Chiropractor had no idea what it was, but she’d like poke around and click my back and my neck and everything and it was handy cos I always had like neck aches and things. 

 

So and it got really bad when I was about 16. And I remember going into school and one of my friends going, “Why are you walking like a penguin?” And she said it right out loud in the middle of the corridor and I was so embarrassed. I hadn’t realised until then like how I must have looked when I was walking. And it got worse and worse until the point where I was, I wouldn’t, I refused to take part in things in PE, ‘cos I thought I’d just end up with a flare or something.

 

And I came to university and it was okay in my first year, and not, it wasn’t that bad. And then like there were some mornings when like I couldn’t get out of bed and I had to roll off the bed and crawl around on the floor, but it would get better during the day and in the end I would more or less forget about it. And then it wasn’t until my second year where I had my exams that things started getting really, really bad, and I couldn’t sleep at night. I was crawling around on my hands and knees a lot, to the point where you know other people were noticing…and because I was not sleeping at night I would fall asleep during the day when I was supposed to be revising. 

 

I couldn’t breathe properly, so my ribs felt like, I can’t really describe it, it was like they couldn’t open to let me breathe deeply, and when I tried to it was like they were on fire or something. And I couldn’t twist, so I couldn’t turn to pick things up, I couldn’t, I couldn’t like wipe my own bum. It was just so painful just to move the tiniest of movements. I couldn’t sit down, I couldn’t stand up, I couldn’t lie down, it was like back to the beginning all over again but a hundred times worse.

 

Sonia's mum wondered if Sonia's symptoms were psychological. Sonia felt that her doctors may have...

I never thought that I was making it up. My mum did. For a bit she was not convinced but she was sort of you know, she’d drop it into the conversation, “You don’t think it might be just psychological?” “No Mum, like you know you can prod it and it hurts. It’s not like it’s just this pain that’s just there. It’s attached to something. I know that these bits of my spine don’t hurt when you press them but these bits do. I don’t think that’s psychological.” But she thought for a while it was. And I began to suspect that maybe the doctors thought that too because they just didn’t seem to know what to do. Yeah.

Sonia felt that her doctor was insensitive when he diagnosed her with ankylosing spondylitis. He was excited about the discovery because he was having difficulties diagnosing her.

The internet is really dangerous I think because I mean I’d known a little bit about it before because when I’d been researching Undifferentiated Arthritis and I’d looked on is it, I think it’s Arthritis Research UK now they call it, I looked on their website just to find out a little bit about it. And I did think well this is a really horrible thing to have, ankylosing spondylitis, I mean obviously there’s worse things you could get I think but and so then to be going to what I thought was an appointment where we’d be talking about future treatment options and to suddenly be told, “Oh no, we’ve, we know what it is now,” and having thought, “Well I thought we knew what it was last week,” kind of, it was, that was already putting me on the back foot and then, my sister had come with me because I didn’t want to go on my own to the consultant because it was the first time I was meeting, because he’s like the superior to the one I’d seen before, I didn’t want to go on my own and she was really happy as well, and couldn’t understand why I was so upset. And of course it was because she hadn’t, she didn’t know what it was. And yeah it was, I just felt really angry I think, really angry that he hadn’t been able to sense that I wasn’t that happy about it, and work out why that might have been, I think. 

 

And it sort of got a bit worse because then I started looking more on the internet to find out all about it, and you start seeing pictures of, I think there’s a really famous one of a man who’s basically parallel to the floor, his back, thinking, “Oh my God I’m going to end up like that.” And you do sort of scare yourself completely stupid when you look at the internet and what there is, and having not been given any information about it at the time, so the consultant I’d seen before he’d given me leaflets, he’d talked me through all the drug options, physiotherapy and everything and this guy just went, “Yeah, ankylosing spondylitis. Whey hay!” Like “Yeah, Woo,” and hadn’t given me any information, how to deal with it, who to go to, or anything like that. It was really a shock. Yeah.

 

Sonia thought about the best way of killing herself but felt 'too chicken at the time' to have gone through with it. She also felt guilty because this would have angered her sister.

So did you actually attempt anything? Any self-harming?

 

No, I sort of, I don’t know if you’ve ever done it but if you search for how to commit suicide in Google it comes up with a whole list of sites, like oh this is, “100 ways to kill oneself,” and you click on it and it will say, “Oh you loser, why are you trying to commit suicide?” or whatever. There’s a lot of, there isn’t going to be a site which tells you what you need to do is turn this to Gas Mark 4 and then stick your head in the oven, or anything. There are lots of sites which will re-direct you to like a page of counselling or to a page where just abuse, like somebody’s like, so and I think I was probably too chicken at the time I think to have actually done anything because I felt so, I think the only thing I was considering was, obviously I had a lot of drugs in my room and I had boxes and boxes of tablets, and I was sitting there trying to work out how much I’d have to drink in order to swallow everything. I wasn’t sure I’d be able to do it. 

 

I was like thinking, “Okay well I’ve got four cups, and a bottle and I’ll have to go and refill the bottle by which time I probably will have swallowed about this many tablets,” and I just, you know trying to calculate everything out, and I just didn’t see how it would work. I also felt a bit guilty, because I thought my sister would probably have been furious if I had tried to kill myself. And so I was sort of a bit stuck. I didn’t really know what to do. And that was why I was crying so much I think because I could see that I could do this, or I could carry on with what I was doing as I was at the minute, and I didn’t know, both ways, I would make my sister angry one way, or I’d make myself upset the other way. And I didn’t know what to do.

 

When Sonia's medication began to work she felt less pain and stiffness. This made her less angry and more confident.

So yeah I think I probably like a side benefit of the injections that I wasn’t expecting is that because it means that I’m not having to think about the pain all the time and not having to think about I need to do these exercises, well I probably should be doing my exercises actually but still, but not having to worry about, not having to worry about not turning up to things. Being able to plan in advance was really good but yeah the thing is being able to see things with some distance, and look back on how it was at the time, before I had the injections. And see how I was reacting, whereas at the time if you’d asked me if I was really angry I probably would have gone, “Nah.” Or I would have just; I don’t know I probably wouldn’t have wanted to talk about it at all. I probably would have just brushed it under the carpet, but now that I have a break from the disease as it were, I can sort of re-examine how I felt at the time.

 

So it provided a, an opportunity to reflect?

 

Yes, yeah.

 

I’ve never heard somebody talking about medication doing that before which is…

 

Well because it takes…

 

It makes sense.

 

Everything away like I very rarely have stiffness, okay so I still can’t stand for long periods of time, and I have to make sure I’m, when I’m doing exams I probably still need to stretch between exams and that kind of thing, and as long as I’m moving all the time then it’s you know it’s pretty much okay. 

 

But it, I don’t have the pain anymore, touch wood, I don’t have the pain anymore and I don’t have the anger that comes with that, I’m more confident, I’m less conscious of like when I’m walking in the street, and more active which probably helps, you know because I’m not in pain all the time and it seems like the most counter-intuitive thing to do exercise when you are in pain ‘cos all you want to do is lie in bed and not do anything, and I never believed them when they told me you need to do it, you know, that’s like that’s so, but now I do a lot more exercise and walking places that I’m just enjoying being normal I think. And it does, it is like a, this extended breathing space to just think about, you can just think about well that was how I was then, I was really angry at the time. Yeah.

 

Sonia's counsellor taught her to make balanced judgements rather than seeing the world negatively. This did not change how much pain Sonia felt.

They taught me a lot of techniques, we had to try and break out of, ‘cos you sort of spiral into it, and you’re trying to get out and you can’t because you’ve gone too far in, and it is sometimes really hard to, because for example when I had that, you know during the exam term and I was spiralling in and in and in and in, it’s so hard to think that there’s a light at the end of the tunnel, because you’re so far down that you think there’s no way out, and it’s just going to be like that forever. 

 

So there’s one they always teach you which is you’re presenting to the jury and the judge, and you’ve got the situation, and you’ve got your slant on the situation and you’ve got the extreme opposite slant. So just say for example that person over there was laughing at you, and that’s what you think, and the opposite was that they’re laughing at somebody else, and then you have to present evidence in your head for both cases, and come up with what the jury would probably think at the end. And that’s what you have to hold onto, that mix of the two. It might not be the most positive statement in the world, well they could have been laughing at me, but they probably weren’t, so that’s the kind of, it’s not completely they definitely weren’t laughing at you because they could have been, but it’s kind of finding that happy medium I think.

 

Does that work?

 

Sometimes. Like it’s difficult with pain because when you’re in pain it’s hard to compare it to something else, and be like, “Well they’re people who are in far more pain.” “It can’t be, it can’t be possible.” You know, you know even though people are telling you, “Well there’s kids in Africa who are starving,” and you see pictures of this, and then, but then you just feel guilty about even being in pain, so it probably is quite difficult with that kind of, it’s more abstract, there’s not like a person to blame it on, that kind of thing, yeah.