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  • ambassadors
  1. Ways to support
  2. Young Voices of Invisible Illness
  3. Ambassadors

Ambassadors

Meet our inspirational young ambassadors, each coping with an invisible illness. Discover their stories about invisible illnesses and the affects it can have on young lives below.

Rebecca

Young Voices of Invisible Illness Ambassador

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20

Tell us about yourself

I’m half Icelandic and half Scottish. I have a type of arthritis but that doesn’t define me, that is not who I am. I’m very open, friendly, creative person. I love anything artsy. I’m currently in college finishing my makeup and hair dressing qualification. I used to be a makeup artist working in mac. Then I lost my job because of lockdown. I took a whole new path and started being a community care worker. I love that. It’s totally different to what I was doing at college. I love helping other people which is why I want to do as much as I can by speaking up about my experiences in life and hope it helps someone else.

What is it like living with a chronic condition?

Since I was young it was always obvious that something wasn’t quite right but as a young person, you’re always told that your joint pains are just ‘growing pains’. I got told the same thing over and over again. At 9 years old it got really bad. If it wasn’t for my mum and the fight she put up for me then I wouldn’t have got the help that I did, but that took until I was 14 to get officially diagnosed. From that I developed a lot of mental health issues because when you’re constantly rejected, constantly not believed you start thinking what’s wrong with me or is it all in my head. The two always go together, which I like to always express to people as well, because when you’re going through physical pain it causes a lot of mental pain as well.

Day to day now I am in so much pain, some days more than others. Don’t get me wrong there are always better days and worse days.

I’ve burnt myself out a lot of times by being constantly on the go but it’s about finding the happy medium for yourself. At 20 now I’ve found that, but it was one of the worst things I’ve had to go through.

What needs to change to support young people?

I think if more people can speak up about their chronic illnesses to bring awareness these hidden illnesses, we can educate the general public and then hopefully their will be more understanding for young people going through the daily struggle of living with a chronic illness. 

How has Teapot Trust supported you?

At 14 I thought there was never going to be any positives in my life. I was struggling to walk, I couldn’t get to the toilet on my own, I couldn’t walk down the stairs. I used to very much live in the future, thinking about when maybe things would get better. But you have to focus on the now. Just talking and accepting that was the way that I found my strategies to cope so therapy was a huge thing. Therapy really helped me to open up about how I felt. I used to bottle everything in. I used to think of it as levels and I would get to the top and I would have a breakdown or get really angry if it got too much. I learned through therapy to express myself and talk about it. I tell that to everyone in my life now. That if you talk about it, it will help, however much you don’t want to. It was becoming too much to handle within myself and within my head.

When my mental state got better, I saw the difference with my physical because I was able to deal with it better. The two really do go hand in hand. Now I’m walking about, working in care, it was stuff I could have never imagined for myself. It’s the process of learning to accept and find a way that works for you.

What would you say to anyone who is considering art therapy?

I’m forever happy that I went through the really tough times. I’d come from a session and sleep for 3 hours because I was so drained, but it was all worth it now. The hardest thing is acceptance but once you accept your diagnosis things become a lot more positive.

Published: 1st November, 2021

Updated: 2nd March, 2022

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Daisy

Young Voices of Invisible Illness Ambassador

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Age 9

Highlands

Tell us about yourself

I’ve had arthritis since I was 2 ½

I like running around outside and playing with my friends I love animals, pokemon and Harry Potter so pretty much like other 9yr olds  except the arthritis which is a pain! 

What is it like living with a chronic condition?

It is so difficult. I get injections every week and I’m tired a lot of the time. My friends don’t always remember that I have arthritis and grown ups don’t always understand. 

What needs to change to support young people?

It would be nice if people had more understanding.  Maybe you could get something to let people know.  Maybe scientists could invent something to tell people if they have arthritis

How has Teapot Trust supported you?

In many different ways.  Sometimes I get really anxious and art therapy helped.  I’m a bit more open now about discussing my arthritis now.

What would you say to anyone who is considering art therapy?

Do it   its helped me and it might help you

Published: 19th October, 2021

Updated: 2nd March, 2022

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Ava

Young Voices of Invisible Illness Ambassador

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Aged 11

County Durham

Tell us a little bit about yourself

 

I’m Ava and I am 11 years old, I have Juvenile Idiopathic Arthritis and was diagnosed just after my first birthday so I have never known any different. I enjoy ice skating, climbing, art and puzzles. My favourite food is sushi. I am also interested in the environment. 

 

What is it like living with a chronic condition? 

 

It’s really hard sometimes as it stops me from doing stuff, I struggle with everyday tasks and that worries me and makes me feel sad. I always find winter hard and sometimes others don’t understand.

 

What needs to change to support young people?

 

People need to be more aware of the challenges and pain of living with arthritis and that children also suffer from this

 

How has Teapot Trust supported you?

 

I have met others living with a chronic condition and it has really helped me to know I am not alone, I used to have an art therapy class on a Wednesday and looked forward to it  as I was able to talk to others who understand what I go through. Some weeks I would log onto the class feeling low and would always come away feeling happier. 

 

What would you say to anyone who is considering art therapy? 

 

I would urge them to do it as it really helps you to feel less alone and brightens up your day! 

Published: 1st November, 2021

Updated: 2nd March, 2022

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Showing 10 of 3

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