A beginners guide to Living with JIA

By 29th April 2015Videos

Beth Douglas gave a talk to her class about living with JIA.  Mum Sharon recorded it for sharing on the SNAC website and we have copied the text below.

A beginners guide to Living with JIA
Today I’m going to talk to you about what its like to live with JIA.
JIA stands for Juvenile Idiopathic Arthritis, which is children under 16 with an unknown cause of inflammation in the joints. Arthritis makes you joints all stiff and sore. Sometimes it’s not all your joints and only one or two can be affected.

Most people would probably think of elderly people when you mention arthritis to them however 1 in 1000 children have arthritis.

Arthritis is a chronic Disease which effects your joints. Your joints can get very stiff and swollen and can be quite hard to walk up or down stairs or even just on a flat surface.

It is quite hard to describe the pain but it is sometimes sore to get out of bed in the mornings and you never want to get up. Some people say that its just normal to want to sleep all the time because that’s life but with JIA you constantly feel tired.

I got diagnosed with JIA when I was 2 and I have been living with JIA for 11 years. I don’t remember what it was like to be at a bad stage, but I still have JIA. I still sometimes find it hard to walk up stairs but surprisingly I find it harder to walk down.

I never let my JIA get in my way or stop me from doing anything, I always try to get on with what I’m doing and I don’t let it stop me from having fun. Sometimes I get sore and what to sit down but I have always been called a strong little girl so I will never give in to pain.

I would never like to feel like I cant do something as I train at athletics 5/6 days a week and I never like being told I shouldn’t go.

Medication, some people say that medications the worst part of having JIA but after 10 years of it I guess I’m used to it. I use to take methotrexate as an injection once a week but then I was told that I could try going of it. I have been off methotrexate for 1 year and it has been heavenly but recently I have been a bit sore -but it’s all under control.
Every day is a challenge for children living with JIA, but sometimes it can be good because I have met so many friends who are just like me. It can be quite hard to find someone to talk to about it but it is really helpful if you pluck up the courage. There will always be someone that you can talk to even if you think there’s not.

Arthritis is the kind off illness that you can never tell what’s going to happen the next day. You just have to be positive because that’s all you can do.

Thank you

Beth Douglas.  April 2015