David

Age at interview: 28

Age at diagnosis: 2

Brief Outline:

David has systemic-onset juvenile idiopathic arthritis. He was 28 years old at the time of the interview and was the oldest to be interviewed. David was diagnosed in 1985. Most of the treatments discussed by other interviewees were not available to David when he was young. It is rare to see young people with arthritis who have medical histories as complicated as David's.

Background:

David works in local radio. He is white British.

More about me...

David has systemic-onset juvenile idiopathic arthritis. He was 28 years old at the time of the interview and was the oldest to be interviewed. David was diagnosed in 1985. Most of the treatments discussed by other interviewees were not available to David when he was young. Due to recent medical advances in the care of children and young people with arthritis, it is less common to see young people with arthritis who have medical histories as complicated as David’s.

 

David was diagnosed when he was 2 years old. He has been on steroids ever since. If he forgets to take his steroids in the morning then by lunch time he is in extreme pain with fevers, stiffness and flares. Although the steroids relieve David’s pain he has experienced a range of side effects. For example, his height has been limited and he has battled with his weight. He has also experienced severe nose bleeds, anxiety, thinning of the bones, diarrhoea, stomach cramps and ulcers. David has taken a range of other medications but he always responded badly to them. A year before being interviewed David was placed on tocilizumab. This is the first medication that has successfully controlled David’s disease activity and allowed him to reduce his steroid dose without flare ups.

 

David has been in hospital for surgery throughout his life and has had over 30 operations. He has had both his knees and hips replaced as well as surgery to his spine. He had a bad experience on a family holiday abroad and contracted several life-threatening infections including Meningitis and MRSA. This was because of his weakened immune system. He also had to have his bowel removed in an emergency operation. David now has a stoma bag. This is something he has struggled to come to terms with and he finds it particularly awkward when he has a night out with friends and work colleagues. David also spent a year in hospital after breaking his hip. The hip never healed and he is confined to an electric wheelchair. 

 

David has always tried to work hard and improve his situation. He managed to get into university and graduate with a degree in Media Studies. He has worked for one of the UK’s main broadcasting networks and currently works in local radio. He was recently announced the UK winner of the 2012 Edgar Stene Prize for his essay Overcoming the challenges of getting around with a rheumatic or musculoskeletal disease. He is currently writing a book in order to tell his story to a wider audience. David finds writing emotionally therapeutic and he says that it “relieves the stress and tension”. In addition to writing, David is a big Birmingham City fan and plays powerchair football. David’s parents have been “a huge rock” to him and give him physical and emotional support when he needs it. They have adapted their home so David can live and be as independent as possible. David is actively involved in campaign work for young people with arthritis charities.

 

David spent a year in hospital. When he came home, he couldn't walk unaided or get up and down the stairs. His parents extended their house and made a room for David downstairs.

So that was in May 2010. I came home after a year, it was weird. I know it was, I mean it was a bit of an anticlimax in a way because you know it was very hard to adjust ‘cos I used to walk around my home, but now I can’t walk at all and spend all the time in the wheelchair, so I’ve now got to use my wheelchair in the house. The wheelchair never used to come into the house before so it’s a huge lifestyle change. You know not being able to get up and go and fetch the remote from the other side, or not getting up, do you know what I mean? It’s hard to adjust, you know the little things like that I couldn’t go upstairs to my room, had a stair lift all these years, to go upstairs I’ve never been able to do the stairs, I’m not you know the Bionic Man, but the stair lift had to go ‘cos I couldn’t get up there anymore so my room was put downstairs. Luckily I’ve got fantastic parents, you know, they're the best parents and they, well we, we applied for the grants from the local council to get an extension done, and we got that. We got a little bit of a grant but my Mum and Dad also funded a sort of side extension so I now live in there downstairs, I don’t go upstairs. We already had a downstairs bathroom anyway for a few years which was funded by my Mum and Dad again, wonderful.

David asked to see a psychologist during his year-long stay in hospital. The psychologist 'really helped' him accept that he could no longer walk.

I did actually request to see one, it wasn’t offered to me, which I thought was bad, you know considering I was in hospital for a year, you know, and I mean another person would’ve gone mad. You know and I’m not saying I didn’t have my bad days but I just learnt to deal with each day. But I did request to speak to someone because it’s good because it’s someone from the outside, you know it’s a totally fresh pair of ears, it’s a totally neutral person, it’s not a family member, it’s not a friend, they’re coming from it from an entirely different angle, and they can see it from a different perspective. 

 

So I’ve really helped me deal with it, you know so what’s changing, and in a way you know it helped me deal with the massive changes in my life. You know from walking, I wasn’t, but you know I could walk a little bit, but that taken away from me is a huge change. But it helped me to deal with that, see it from a different perspective. You know and ways to deal with it. So this is when, I mean I’ve always been positive but learning to accept things instead of fighting against them. You’re never going to beat it. You know the only way you can do is accept it in order you know, you know you’ve got to embrace it, you can’t reject it. You know otherwise you’re gonna lose, does that make sense?

 

See the patient as a person not a condition.

Okay I think the main thing is you know you must see the person, don’t automatically see the condition. Don’t see a body but see the person. Like I said earlier about you know if my consultant treated me by my blood results I’d be in hospital. So you know look at the individual. You know I mean too many times people are you know, I mean clinics these days it’s like a cattle market now. Going in there’s one out, there’s one in, there’s on out, you know. And the consultant sees, you know he might see 20 different people in a morning. But each of those people will be different and have different needs, and they’ll be on different medication probably and be of different ages. They all must be treated individually. 

 

And if that means different information, more relevant information to them, more relevant course of treatments, and it could be anything. But that’s my big, big critique in today 2012, is that people don’t see the patient. They just see you know they just see a body part or a head, you know treat the individual.

 

Some people find it hard to accept that they have arthritis. It's important to go to appointments and continue treatment even if you don't like the diagnosis. You still have a great future ahead of you.

I can have sympathy for someone who’s diagnosed say in their teenage years because they, it’s like me and my bag, I know what it’s like before, and I think that when you have a change it’s hard to adapt to it. So someone being diagnosed later on they will find it hard. There’s no denying that. They don’t need me to tell them that. But it’s you know, you know there is support out there, listen to the consultant, attend your appointments, like a lot of young people miss them, you know I’ve been in clinics when young people haven’t turned up. You know and that’s partly why I haven’t met many young people because they don’t turn up. Do you know what I mean? That’s, that’s a no no. Always turn up, take the advice, you can still live your life, college, jobs, university, relationships. You know it’s not as you know, I know it might be bad sometimes but with the right management and with a little bit of you know, be positive, don’t ever dismiss it as nothing, but try and take it on board and sort of take it with you rather than leave it at home, ‘cos you can work around it.

 

And my point is you can live with it, you know, you can do all the things you know other people can. Just maybe in a slightly different way. Like I can, I actually play football, I play wheelchair football, you know so I can play football. I just do it in a different way to the norm, do you see, so it’s about adapting.