“I felt invalidated. Nobody with arthritis should feel this way.”18 June 2020
Chloe Umpleby from Middlesbrough has been living with juvenile idiopathic arthritis (JIA) all her life. Her parents noticed symptoms at 18 months old, before she could even walk.
Now 20, and in her third year at Lancaster University studying history, she tells us about the stigma she’s faced growing up with the condition, how she manages her symptoms and how she’s feeling about the future. Chloe is passionate about dispelling the myth that arthritis is something only elderly people get.
“Falling over in the morning is one of my first strong memories of having arthritis.”
I have arthritis all over my body and a condition called uveitis, which is basically arthritis in one of my eyes.
I don’t remember being in a lot of pain early on because I was very young. One of my earliest memories is of waking up for school and falling straight to the floor. All I wanted to do was go in as normal, but my mum said, “you can’t go to school if you can’t walk”. I remember feeling really sad that I couldn’t be with my friends.
It was around this age that I first became properly aware. I was confused, I didn’t know why I was in pain.
“Whenever I flare up, I go into almost complete isolation because I can barely leave my room without being in pain.”
On good days I have no pain, just stiffness which loosens up eventually. On a normal day I might get the odd twinge in my knees, but on a bad day I can’t get out of bed.
My whole body flares up. I feel a dull ache everywhere, especially in my wrists, knees and back. The ache is always there, it never goes away.
I also experience chronic fatigue which means I can’t do anything at all. The whole day is a write off.
And when my uveitis flares up, the pain is almost unbearable. I have to sit with all the lights turned off and curtains shut because my eye gets too sensitive to light.
There was a period when I went through relative stability with my condition, I didn’t have much pain or any side effects, but in the past couple of years, I’ve started having more frequent flare ups, especially with my uveitis.
I have vivid memories through my teenage years of waiting for hours in A&E to see the eye casualty doctor just to get drops to stop the flare ups. Now, my vision is permanently damaged in my right eye.
“It hasn’t majorly affected my relationships. Although there are people who haven’t understood it.”
My mum describes me as being a resilient child. I didn’t want people to fuss over me. I wanted to be a normal kid.
I think this attitude came as a result of what other people said to me throughout my life: “Arthritis is only for old people, you couldn’t have it” and, “Oh well it’s just aches and pains, nothing big.”
This made me feel like I was being dramatic, so the only people I would talk to about it were my mum, my best friend and close family.
In sixth form I opened up a bit more, meeting new open-minded people. But I still received comments from people who said it ‘wasn’t a real thing’, which really hurt me.
Then just before a set of exams I had a flare up in my wrist and could barely write. I spoke to my exam advisor and she was amazing, and I was offered a computer, rest breaks etc. This was a huge sense of validation for me. It made me think: “Yes, this is hard, and I do need help”.
Because of that experience, I signed up to the disability service as soon as I got to uni. It was the first time I truly felt like my arthritis was recognised.
This empowered me to tell uni friends about my condition. People asked questions and showed an interest. I talk openly about it now.
“I often feel anxious, but I’m learning to manage this.”
Last year I was diagnosed with general anxiety disorder, which all centres around my health.
I’m always worried that I’ll get ill because of my immunosuppressants, or that I won’t be able to get vaccines. And I get bouts of depression when I’m in a flare up because I don’t like having to rely on others – even my boyfriend, who’s amazing.
But I’ve just finished some cognitive behavioural therapy (CBT) to help me overcome it, which has helped.
“Seeing there were more people exactly like me out there. I didn’t feel alone anymore.”
Discovering other young people who have been through the same things as me, has helped me so much. I now want to help others with arthritis get the recognition I have.
Since the age of 16, I’ve known this is something I’ll probably suffer with my whole life. I was worried about this at first, but now, not so much. I try to live day by day. I accept that there will be bad days and that’s okay.
I’ve just finished my final year dissertation and after graduating, I’m hoping to move to London to study for a master’s degree. I also want to so some travelling, including climbing Mount Kilimanjaro. But we shall see!
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All about JIA
For a diagnosis of juvenile idiopathic arthritis or JIA to be made, your child must have stiffness and pain in – or inflammation of – one or more joints for at least six weeks, although symptoms often last much longer.
I didn’t want to be seen as ‘the girl with a disease’
Izzie Clough was diagnosed with arthritis when she was nine. Here she shares the journey she’s been on with her condition, from hiding it completely, to finding a job where she draws on her own experiences every day.