The total truth.
Oh, I'm dreadfully sorry, we've made a mistake, you don't have arthritis. Oh well, you can go home.
To be honest, the first thing that I would have liked a rheu-matologist to say to me when I was first diagnosed in, "I'm only kidding. There's nothing the matter, take these tablets, and the tiredness, lack of eating, hair loss, rash and other symptoms will go and you will be normal again.
I would have liked my rheumatologist to tell me that there are other kids that have the disease that are just like me.
I would have liked my doctor to have known that I am shy and sometimes afraid to ask questions.
Since I was diagnosed at a very young age I cannot remember what my specialist told me and my parents. If I had been diagnosed with juvenile arthritis at an older age, I would have liked to have been told exactly what my disease was about and how would it affect me and my family and my future. And what could I do to make my life a little more comfortable.
I would have liked him or her to be 100% straight with me. Why hide anything from me? It'll only hurt me more later.
When I was first diagnosed, I was very young, so it is hard for me to say what they should have told me because I probably would not have understood. However, when I was at an age where I did understand, it might be that they assumed I already knew.
They need to explain it, right from the moment it's diagnosed. This is what it is, this is what can happen, and they need to do it in simpler terms.
We really need an informed medical team, because when I first got diagnosed, I was told that I was going to grow out of it when I was 18. So I hung on to the hope of growing out of it when I was 18.
There was no explanations as to why you should be doing that. It's all very well being told you should be doing this, you should be doing that, but why? They don't tell us enough about why we should be doing it.
I would have liked to have talked to someone who'd had arthritis, tried to get a job, and knew how to work round it.
I was just concerned that I couldn't hold a pint with one hand and I had to use two. Solution? Just stick to bottles.
You need encouragement, but sometimes people can be negative, saying "well I don't think you'll be able to do this." But until you actually try it, you're not going to know.
WHAT DO YOUNG PEOPLE THINK IS DIFFERENT ABOUT THE WAY HEALTH PROFESSIONALS LOOK AFTER A YOUNG PERSON WITH A CHRONIC RHEUMATIC CONDITION COMPARED TO A YOUNGER CHILD OR AN ADULT?
Doctors [who look after young people] ask "How have you been?" and if you aren't confident talking to doctors and say, "Alright," they still ask you if your joints are aching, have you any headaches lately? But if you go to an adult doctor, and they ask "How have you been lately?" and you say "Alright," they don't ask you all those questions. They say "Ok then, see you in 6 months," and you go. I think the adult doctors are probably much stricter and not as kind compared to the other doctors, who probably have a better sense of humor.
I think my family is a little too over-protective of me sometimes, which has its advantages and disadvantages. I do need a little more looking after than a young person without a chronic condition, and having a family around me makes me feel more secure and happy. Although, when you are approaching adult age, you need more independence, and sometimes it's hard for my family to see this. Health professionals treat me with care and respect. I need to feel secure around them, like with my family. Doctors see that I am becoming an adult and give me help and advice to make my future as easy as possible.
It is different because they treat you in a different manner. They are nice to you and make you special because of how you are, but they don't patronize you like they would if you were younger.
I think younger kids really might not understand what is happening very well and might be really afraid. Older kids can understand more and are able to know more.
They treat us more like adults and explain options and choices to us.
When you are younger—aged 10-19 years—these in my opinion are the "learning years." Clinic consultations are conducted, with many members of the medical team and your parents and asking the questions making the decisions for you, and this, as you can imagine, can seem overwhelming to the patient at this stage. However, you do learn from this, and then as you grow older you can make the decisions and ask the questions for yourself. Then, when you are feeling able, you are encouraged to attend the clinic on your own, which enables you to build a trusting relationship with the health professionals and creates a more informal atmosphere, which in turn helps the patient to relax and trust the professionals.
I think it is important to remember that the teenage years are the worst possible time for someone to obtain arthritis, so patience and understanding are crucial.
A doctor can listen to a 10- to 19-year-old, what they have to say and how they feel towards the treatment. They are the ones who can write down and ask questions.
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