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Arthritis (young people)

Messages to parents

Parents of young people with arthritis had advice they wanted to share with other parents in a similar situation. Here is what they had to say:
 
• Life can be good but sometimes life can be hard. Try to stay positive by remembering what life is like on a good day. 
• Don’t be afraid of the medications. They are there to help your child and you can always ask the doctor about other options. 
• If you are having difficulties finding information then ask for help. Be determined to find answers even if you feel the questions are daft. 
• You’ve got to have the courage to fight for what you need and to stand up to people if they are not helping enough. 
• Make sure you know about all the financial entitlements your child and family can receive. 
• You can ask to see another doctor if you are not happy with your child’s treatment. 
• Be open and honest with your children. 
• Your mental health affects your child’s wellbeing. Get help if you need it. 
• There’s light at the end of the tunnel. 
 

There can be days of great pain but there also are days of great joy. Stay optimistic by thinking...

There can be days of great pain but there also are days of great joy. Stay optimistic by thinking...

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Only that it's a tough road to go down, it's very tough but there can be days of great pain but there can be days of great joy and the joyous ones will always make you forget about the bad days. I tend to, of the horrible things that have happened to me, they're in the back of my memory banks and every now and then and I think about them, I can go into floods of tears so I try and keep them stored back here all the time. Never goes away but it's always there because that's what makes you the person that you are. But always concentrate on the positive and not the negative. You know on the really, really bad days just think about, as Jessica said in hers, it does get better and there are worse people out there than you. Going back one example – Jessica had to spend a night on a cancer ward - treatment that they were giving to her - not that she had cancer but it was part of the cancer treatment and you spend a night on there and that really does open your eyes because I was lucky in the fact that I was taking my child home the following day. There was parents in there that weren't taking their kids home and that's heart-breaking but that then gives you the strength to move onto your next days because you've always got that thought in your head that there's always somebody worse off. You know you think your life is bad but somebody else's life, somebody just round the corner from you or in the next bed to you, theirs is even worse and it's sort of like it makes you feel a bit lighter and makes you, just prepares you then for the days that are coming. So it's a horrible, horrible disease but it does have its, I can't say good things, but there is light at the end of the tunnel. There's a lot of light at the end of tunnel having got to, Jessica now to nearly twenty one, I could picture this many years ago but now to have actually got there and seen the woman that she's turned into now, it's a joy.

 

Parents have to be brave but also recognise that they are only human. They have to be strong...

Parents have to be brave but also recognise that they are only human. They have to be strong...

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For other parents who have arthritis who have children also with arthritis would be to be patient. To, to go to your GP to get some support. Counselling does maybe work on some level for some, if you feel the need to talk about it access it. Access, because your mental health affects your child. If you are, if you’re not willing to talk about it and to embrace it into whatever life you have, this is your life, then you’re gonna have extreme difficulty. 
 
If you’re down and depressed, because if you are a parent that has a child with this you will be, so my advice is be brave and be upfront and be honest with them. And tell them you’re having a hard time, I think I need some help. I’m a parent, but I’m also human. I’m going to get someone to talk to on my own but I will be there for you, but I need to do this for me. And be strong enough to say I need help. It’s one of the hardest things that I’ve ever had to say was that, you know, I need help because I, I thought I was infallible until this hit me like a brick and now I know I’m not, I’m just a Mum trying to do the best I can for myself and my daughter, to go through this health system which is a nightmare. But if you need support acknowledge it, and get it because in the long term it will benefit you and your child enormously if you can access the help that you need as quickly as you need it.
 
 

Figure out what financial entitlements your son or daughter is entitled to, such as Disability...

Figure out what financial entitlements your son or daughter is entitled to, such as Disability...

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Well it’s, you know as I said before it’s a tremendous shock, its life changing like any illness, long term illness. But treated with strategy it’s hard to do, try and look possibly dispassionately as if someone else would be looking in on your case, and try and work out you know what you’re entitled to, and what, ‘cos sometimes you feel guilty asking for something because it’s your role as a parent, that’s what you should be doing as a parent anyway. But wait a minute, you’re not getting it for yourself, you’re not beavering it away into a stash to go off to Trinidad on a holiday. You know if she’s entitled to disability then you get disability because at the end of the day if you don’t ask for something and you don’t get it in the right, in the name of your child then you will only make it difficult later on in life I think. That’s my personal view. So you are the champion of your child. Do it for your child and but always keep an eye on your own well-being.

 

Don’t be afraid when doctors put your child on strong medication. They are designed to help and...

Don’t be afraid when doctors put your child on strong medication. They are designed to help and...

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Is there anything that you wished you knew earlier?
 
I wished I hadn't known that, I just wish I hadn't been so afraid of the medication because I would have her on it, I wouldn't have been carrying her up and down stairs and she wouldn't have to go through all the stuff she had to go through. I was really afraid of her having to have her joints injected and her joints haven't of have to be injected. I know a lot of kids have to have that done but I suppose her systemic is maybe stronger than the joints, you know, involvement but I'm just, I wish I'd just hadn't of been afraid of the drugs and that's the only message is don’t be afraid of the doctors putting your child on a strong drug because they're actually trying to help you. I sort of had the feeling that they were all up against me, that they were trying to put her on stuff that was going to damage her in another way, you know, so.
 
 

Be determined and speak up if you think there is something wrong.

Be determined and speak up if you think there is something wrong.

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I mean of course I didn't want to see him in as much pain as what he went through at the start but I don't think I would have changed it. I think that we were quite, what's the word? We kept, not demanding but we were very, we knew there was something wrong and you just have to keep going, keep going and not sort of let it lie. We, we just knew, there's something wrong, we have to find, we just have to find what it is and we were determined to and we did. So…we were never in denial. I know some people probably think, 'Oh no it's not that, it's nothing.' We knew we were dealing with something a bit more serious than just a pulled muscle and we were just very determined really and spoke up and you know made it really clear how we felt and how we wanted to move on and made that clear with the doctors as well.

 

Sometimes you have to just “get on with it” and deal with whatever life throws at you. Try to...

Sometimes you have to just “get on with it” and deal with whatever life throws at you. Try to...

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I would say that you do have to really just get on with it and not sort of think and harp on it because we've always just moved forward; we don't move backwards, we just carry on. And if we do get a flare up we'll deal with it. I think, I never expected that Bradley would be the way he is actually, I thought, you know, he's going to be limping for ever because you just do but I just think the methotrexate, it just controls it and the way I see it – we will, well the nurses at the hospital and us, we monitor. We know exactly what's going on in Bradley's body. Some parents haven't got a clue what's going in their children's bodies but I know what's going on with Bradley. I'm very on the ball when it comes to treatment, keeping his appointments, all the paperwork; I keep everything completely in order. I know every appointment date and you've just got to be positive, there's no point in, in really harping on it because you want to make it as easy for the child. You don't want to sit and talk about it all the time and talk about it with other people all the time. He just needs to be normal and I mean his friends all know the condition that he has and it makes absolutely no difference. They don't treat him any differently, they don't see him any differently and that's all that I want. I just want him to be, he's Bradley, that's it.


Last reviewed November 2018.

 

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