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.

Okay then and you mentioned the Enbrel (etanercept)?

Yes.

Why did she refuse to have it to begin with? What were her concerns?

Her concerns was the fact that it’s a needle. She’s very phobic; I think she doesn’t like anything like that. She’s really never been ill you know she’s never had really anything wrong with her, so she hasn’t, she hasn’t herself been in that system. And so for her the thought of having an injection twice a week, was absolutely terrifying because she had no power. She already said no and they didn’t listen to her so she had no power, so she was feeling very belittled, she was feeling ever so isolated, she was depressed and then they said to her, Well it doesn’t matter what you say because I, what I’m going to do and I’m going to totally disregard you as a human being and I’m going to talk to Mum

Now, now Charlotte got very upset and said, I do not want to have it. I’ve said that And she was, she said she didn’t want needles, she didn’t know how it was going to make her feel so she had that scared, I’m lost, I don’t know. And when a child doesn’t have direct, directives of this is going to hurt, this could sting, this could bruise, this, that and they didn’t know how she would react, she felt lost and bewildered and belittled and so her back went up literally. And she said, No, I’m here but they wouldn’t see her. So she was very, very upset so she tried to gain control and so she said, No I don’t want to be injected. I want to be normal Was so called, inverted commas phrase which is a frightening word cos I don’t know anyone normal. I want to be a normal child, I want to run; I want to wake up in the morning and not ache. I want to be able to have no drugs. I don’t want to go to hospital every other week and see someone else and, and you know, and do tha and so they sat her down and she was talked to them, and she just went blank. Charlotte will go, she’s so, she just sat there and went blank. Which means there’s no, there’s no point.

So the nurse said, Well we’ve talked to you and Charlotte was just like that, looking round the room and said, I don’t want to talk no more. I’ve had it. I’m not here am I And they actually said, No which was the worst thing they could have done. So I, I talked to her as, not as a mum, as an arthritis sufferer. I took her outside and said, I’ve been on it cos she knew I’d been, she’d seen me inject myself in, in my belly years ago and I said to her, I think it will benefit you. If it doesn’t we can always come off it, but you have to give it a try. And that’s how you gain your power. You have your power by you saying you can do it, and then if it doesn’t work then you can say no and I will back you and I won’t let them do anything else to you. But if they are suggesting it, and then they think it’s a good idea, we should go along with it and if it doesn’t work, or if it makes you ill we can stop. And that’s your power. And you saying no, I will back you and we will go in that room and say well we’ve, we’ve done it, we don’t think it’s improved. Charlotte’s not feeling any better. We’ve discussed it as a unit and we’re not going to do it anymore. Can we try something else

And that gave Charlotte, said, Charlotte said Well okay, I’ll give it a shot. I’m not happy, I’m never g

Well when we met her for the first time Charlotte said, She looks about 90 years old. And them clothes must be like, you know, last century you know And she’s not cool and you know and everything else. And I just go, Just listen to her and the first words she said was, Hallo Charlotte You know, I am, why don’t you come into my office and tell me all about it

And Charlotte was there and wouldn’t talk to her cos she didn’t know her so Charlotte’s quite shy when she doesn’t know anyone. And she just, the consultant just sat there and smiled at her and said, You really do want to speak to me, but you’re shy She goes, I’m shy as well, so why don’t you speak to me and I’ll speak to you and I’ll tell you how my day went and you tell me how, how things are going. And so she’ll ask her how was school and Charlotte would respond, Terrible And then she’d go, Well why? What? You know teachers’ terrible, food’s terrible? You know I heard the canteen can be really terrible And you know and Charlotte would just respond to her and say no it weren’t the food, and then she’d say, Well what was it? What was it that really made you feel like it was a terrible day You know and then Charlotte would say, Well I was aching and the stairs were too high she goes, well you know, Ah right, so you know did it take you a long time to get from the bottom to the top And Charlotte said Yeah it took ages. By the time the bell went

And so then the consultant knew that you know she was having a real struggle. And she was just able to talk to her, not condescending, but in the way that Charlotte felt that she was, she was listened to, and that she could grab what she knew was the truth without you know, Okay you know it was, it was a wonderful warm empathy.

She had a very warm empathy oh she didn’t pretend and Charlotte how Charlotte felt because she goes, I’m not you, so I don’t know how you feel. But if you tell me then maybe I could try and together we can all try to make your life a little bit easier And Charlotte said, Well you know I hate needles, and I hate treatment and Mums not well, and I don’t like it. And you know I, I wish I wasn’t here And the consultant said to her, You know some days I feel like I don’t want to be here neither. I get up and I don’t want to do this and do tha and, and she asked Charlotte how, how she felt about needles and Charlotte said, Well I don’t like em cos they hurt and that And she goes to her, You know one of the, one of the things about being a child, or a teenager with arthritis, or all through your life you will find that sometimes you don’t, you don’t have the power that you think you should, and sometimes you have to do things that are not nice for you, like does your Mum make you eat your vegetables even though you don’t like em She said, Yes But she goes, There are vegetables that you do like, but some that you don’t like. But you still have to try them otherwise you won’t find out whether, why you didn’t like them

And Charlotte just, at the end of time up, she was, she just goes to me, I like her and I just goes to her, So do I I goes, Why? Why do you like her And she said to me, Well she didn’t treat me like I was five, and she didn’t treat me like I was 50