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Arthritis (young people)

Messages to young people with arthritis

The young people we spoke with had messages they wanted to share with other young people with arthritis. Here is what they had to say:
 
Diagnosis, treatment and healthcare professionals
• Tell your doctors and nurses as much as possible each time you go to the clinic. The sooner they hear about any new symptoms, the sooner they can begin treatment and monitoring. 
• Ask lots of questions. If you can’t remember them all then write a list. 
• Take someone with you who can help you remember what the doctors and nurses have said. 
• If you are not happy with your treatment then make sure you tell your doctor or nurse. Don’t be afraid to ask for alternative treatments. 
• Always speak to a doctor before you stop taking your medication. 
• Trust your own opinion. You know how you feel better than anyone else.  
• Treatments have improved lots in recent years so stay positive. With the right treatment your symptoms could improve. 

 

It can be hard getting a diagnosis so people need to be persistent with doctors. Being diagnosed...

It can be hard getting a diagnosis so people need to be persistent with doctors. Being diagnosed...

Age at interview: 21
Sex: Male
Age at diagnosis: 21
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Yes, I think first of all, I think when you’re in the diagnosis stage it’s very important to listen to your own opinion. While doctors and you shouldn’t disobey doctors anyway because they are medically trained and they understand it, you know your body better than anybody else. No one else can tell you what’s happening in terms of how you feel. A doctor is able to diagnose based on what you feel. So I think it’s very important to be persistent, you know, don’t take a doctor’s word as a hundred per cent necessarily. Maybe later on when you’re diagnosed with treatment, you know. That’s more important but in terms of diagnosis work actively because you yourself will be able to differentiate between arthritis and just bit of a strain with a muscle. There is a big difference and you will notice it. There is there’s no kind of foggy area. You will know. 
 
In terms of treatment and the future, I think you can be a lot more positive now. I mean in before last ten twenty years, all they had was anti-inflammatories and maybe the sulfasalazine and past that, there wasn’t much there. So a lot of people were left in a bit of a situation with worries about the future and this, you know, some people might see this as just typical picture of a man slumped over with AS because of the fusion process but that is very rare now. That hardly ever happens. So don’t worry about that because this new TNF treatment is very effective and for people with AS specifically and it brings promise of such a, you know, of a future that’s hardly adapted anyway to arthritis. So people shouldn’t be worried in that case specifically. 
 
 

Some people find it hard to accept that they have arthritis. It’s important to go to appointments...

Some people find it hard to accept that they have arthritis. It’s important to go to appointments...

Age at interview: 28
Sex: Male
Age at diagnosis: 2
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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.
 

Emotional support
• Having arthritis can be scary and it’s natural to feel upset and low. 
• Always remember that you’re not alone. 
• There will be good days and bad days. Dwelling on negative thoughts and emotions can make you feel worse. Remember what life is like on a good day and tell yourself things will get better soon. 
• Try not to “bury your head in the sand”. Accepting that you have arthritis can make your life easier. 
• Don’t hide your thoughts and feelings from family and friends. Talk to people about your worries. 
• Being around others who are positive is important. 
• If you are being bullied tell somebody about it. 
• Sometimes other young people with arthritis are easier to talk to. You can go on charity internet forums or events run by some charities and hospitals. 
• Don’t be embarrassed to ask for help if you need it.
• Having a good sense of humour and learning to laugh about things can be a big help. 
• Get yourself a hobby that will distract you when times are bad. Never give up hope. 
 

Don’t let arthritis get you down or give up on things you want to do.

Don’t let arthritis get you down or give up on things you want to do.

Age at interview: 15
Sex: Female
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Is there anything that you would want to tell others who have just been diagnosed with arthritis?
 
Don’t let it get you down because if you let it get you down it gets worse and it takes over your life more. Like just be positive about it and don’t give in every time you’re in pain ‘cos you won’t have, you won’t have fun all the time. And like you’ll get bored with it. And you will regret it even more though. Like if you just have fun and you don’t give up at every hurdle then you’ll have a better time.
 
When you said don’t give in that’ll keep you down, what do you mean by that?
 
I don’t know. Like I think that if I’d given up at everything that I got told to sit down in PE I think that I’d regret it because people would just think well I gave up too easily. And like I think that would affect like who I am and like the friendships that I form and everything. ‘Cos people might think that oh she’s just getting out of it for like an easy ride or something. But I’d rather, like I’m quite determined I’d rather just go full into it, even if I get hurt.
 
 

Having a hobby and surrounding yourself with “happy things and happy people” can help you remain...

Having a hobby and surrounding yourself with “happy things and happy people” can help you remain...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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I know it’s easy to say and you’ll find your own way of coping with it but that’s another thing, find something, a hobby or something, like I did with my gaming, that you just throw yourself into and something that you do when you feel really, really rough and doesn’t just have to be at those times. But something that you can do, preferably on your own when it’s just yourself and you can really throw yourself into it and really love and enjoy it. And that’s really, really beneficial if you can do that because it will take you away from everything else. And it doesn’t matter how silly people think it is or how they, they look upon you for doing it, just do it anyway and make sure you love it and that will help.
 
And also keep positive as well even though it’s really difficult to sometimes. I definitely believe that if you’re positive about it and if you keep as, if, I think surround yourself with happy things and happy people then that can keep you feeling quite well as well.
 
 

Try to seek out other people who have arthritis. They can understand how you are feeling and can...

Try to seek out other people who have arthritis. They can understand how you are feeling and can...

Age at interview: 20
Sex: Female
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If you have been diagnosed try and seek other people out that have it as well because it's always nice to have a little bit of support from other sufferers and you know; I don't know how you would go about that but try and find like meetings or something that you know have other families that go to them or something. Even, I don't know, if you made, somehow approached the consultant and asked is there other kids in the clinic that might want to think about meeting up and having a chat or something like that. Just you know build some form of social network I suppose with that. Where like, the CCAA charity weekend, the one I go to, that's how I met my friends with arthritis and they're wonderful, they're normal people and you know they're great people to talk to if something was just like a bad day and everything, great to talk to because they know what's going on. You know they know what you're feeling and everything and you know you're not alone, you know. There's one in one thousand people in the country that'll get it so you know, there’s bound to be someone near you and everything. 

Looking after yourself
• Get as much information as you can about arthritis. The more you learn about your condition the better you will be at managing it. You can visit websites like Arthritis Research UK or speak to doctors and nurses.
• Look after your body. 
• Eat healthy foods. Exercise as much as you can and do the stretches that physiotherapists recommend.  Go to hydrotherapy if you have the chance. 
• Having arthritis can be very tiring so make sure you get enough rest. 
• Take your medications on time and don’t skip any doses. 
• Wrap up warm when it’s cold. 
• It sometimes helps to pace yourself and plan your day. If you do too much you may regret it the next day. 
 

Doing your exercises can make a big difference to your joints and improve mobility. It also helps...

Doing your exercises can make a big difference to your joints and improve mobility. It also helps...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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I would also advise to do what they ask you to. You know, do your exercises and I know it’s laborious and you have to fit it into your day but it’s really worthwhile because without exercise then I may have lost a lot more of my joints. And I think it’s quite important, even if it hurts. Like I say, you have to try and fight through the pain and sometimes you have to know when to do that and when not to. If it’s a tired pain, then you’re not going to work through that but if it’s a pain from maybe after an operation and it’s hurting and it’s feeling stiff, you just have to go through it and exercise it as much as you can within reason not, not o so you’re damaging it. And just keep working through it because it will get better and you’ll see the benefits of it. And then when you feel good after that, when I was walking with my hip it was just, it was the best thing to be able to go and go shopping. And I couldn’t walk for very long but it was longer than I could walk for before and I didn’t have this limp that made me look like I was all lopsided. And I wasn’t in a wheelchair and it was it was a kind of thing that you forget about when you get well enough, you forget that you were ever in that bad place but when you fight through it and you, you do everything they ask you to because sometimes you feel like they’re just being a bit of a nag and getting you to do all these things. But they are very beneficial.
 
And I would also advise I know it’s difficult if you’re used to smoking or drinking but I’ve spoken to people about it and they’ve cut out alcohol completely and the effects have been mind-blowing. They’ve, they’ve felt the arthritis completely ease up and likewise with smoking as well. 
 
 

If you want to do something that may be tiring, plan ahead, make sure you get enough sleep the...

If you want to do something that may be tiring, plan ahead, make sure you get enough sleep the...

Age at interview: 15
Sex: Female
Age at diagnosis: 11
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Talk to someone about it. Don’t be a bottler. You should definitely review your choices and plan things for what you’re going to do like I’d say sleep before you go and do something big that might tire you out completely if you didn’t sleep and you’ve just got to pace yourself really. You don’t want to do something too fast and then completely be painful the next day. 
 
You’ve just you’ve got to learn to just like, I suppose you learn more of experience when you do time but you’ve just got to think, also accept it. You accept it. You’ve got to say that you do have it and you can’t change it. There’s no cure, so get on with it. Bit harsh but it’s true.
 
Living for the here and now whilst planning for the future
• Having arthritis sometimes leads to new opportunities. You may make new friends, discover fun things to do or even pass your driving test at 16 rather than 17. Some people receive support towards the cost of a car. 
• Take every day as it comes. 
• Never stop dreaming about the future. Aim for what you want out of life but look for new ways of achieving these aims.
• Remember that treatments improve all the time. 
 

It’s important to look after yourself and concentrate on the here and now. Prepare yourself by...

It’s important to look after yourself and concentrate on the here and now. Prepare yourself by...

Age at interview: 25
Sex: Female
Age at diagnosis: 22
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Really from the point of diagnosis, I would try and get as much information as possible about what you’re about to face because it can be a very lonely situation and it can be very scary and worrying and all these thoughts about the future and what your disease will mean will come to you. However, nobody really knows. You can’t tell what the future is going to be. So if I could give myself any advice for me back then is to not dwell on what’s going to happen, you know. Just concentrate on the there and then, how you’re feeling and how you can manage and, you know, how you can feel better at that point. You know, and get as much, ask for help that, you know, get as much help as possible because and don’t be afraid to ask for it because I was embarrassed to ask for help and my life would have been so much easier if I hadn’t of just struggled to do things and I’d have just swallowed my pride and asked for help when I needed it.

 

Having arthritis can lead to new opportunities such as meeting friends and driving, so “keep your...

Having arthritis can lead to new opportunities such as meeting friends and driving, so “keep your...

Age at interview: 16
Sex: Male
Age at diagnosis: 6
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I always say keep your chin up, it’s not the end of the world. You learn how to deal with stuff and don’t hide away from your friends and family because they’re the most understanding people that you will find.
 
And you have so many opportunities from driving a year younger to meeting new friends and getting a free car through mobility schemes and stuff like that. So yeah don’t get disheartened just from the fact that you’ve got something, and live or try to live your life that you would before you got diagnosed but take it slowly and plan ahead, like a week before you want to do something.
 


Last reviewed November 2018.
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