So when were you diagnosed Carrie? I was diagnosed at 18 I was admitted to hospital and that’s when I got diagnosed so after about six months of me initially going to the doctor. What about you? I was 16 when I was diagnosed, but I had been ill for a long time. But they had put it down to growing pains, fibromyalgia, ME all of these things before they thought of arthritis. How about you? I was three so I’m guessing my story is really different to both of you because you know what life was like before-hand and then you got JIA and then I have only ever known living with it so it is slightly different.
How was like going to school and attending school like that? Yeah, you know, sometimes I was in a wheelchair, I was having to go to hospital appointments and I think you know what it’s like, every week or you know twice a week. How did you find adapting to college and uni? Well I was actually in year 11 so I was in my GCSE year when I was diagnosed.
All the people who were at my school had no idea. I mean they had heard of it because their grandparents probably had it but not because they have it or anybody young has it so they were really confused by it. And when I went to sixth form, again, I was really poorly and I was unable to sit my exams. I sat my exam in my pyjamas. Do you feel that you have to be proactive in the condition? because I think I personally feel that you have to be kind of on top of everything and make sure you’re up to date with your blood results and everything like that to make sure you are getting the best care that you need. we have to live with it in terms of the fact that we have not been diagnosed aged 50 or 60 we have to establish careers while having it and we wouldn’t want to sit there not having a career or not having the life that we wanted for us. No, we are not going to give up. No way When I was doing my GCSEs, so not long after I had been diagnosed it was approaching my biology exam and it was a really important one for me because I wanted to go on and study science afterwards so I had to do well and I was really really poorly.
I had been in hospital that morning and they said ‘no, I don’t think you should go back to school we think you need to stay here’. And I was going ‘no, I need to sit this exam, I need to do it’ But I remember feeling just so poorly that day. My hardest day to date, it was probably the second time in my uni that I had come in on a walking stick. So I was walking down the corridor and they had obviously never seen me on this stick and pointed at me and laughed in the middle of a really crowded corridor. I was quite taken aback because I wasn’t expecting that reaction because everyone else had been so sympathetic or just didn’t mention it and just didn’t make a massive fuss.
But I remember ringing my parents afterwards and being like ‘why did he laugh?’ and they said: ‘you have got to remember that you were there you showed up and with everything you are going through, you showed up’. And I think that is what I have always got to remember and everyone should remember that even with arthritis you showed up and you are living your life..
As found on Youtube