Haydens Voice

As you can probably tell by the name of my blog, my name is Hayden. I am writing this to be an advocate for young people with disabilities such as my own.

My first post is just an introduction to the condition that I personally have, and how it affects me. I have Juvenile Idiopathic Arthritis; it is an inflammatory condition that occurs mainly in children but can follow you into adulthood.

Arthritis has both active and passive stages, sometimes both at the same time. Different parts of the body are affected at different rates. Arthritis is a chronic disability; it affects you even when it isn’t actively flaring up.

The first time I had an arthritis flare up (the pain is more noticeable and severe) was when I was ten years old. It was December on Christmas eve; I thought I’d hurt my hand throwing snowballs at my dad. Later that day I fell on my wrist, and it hurt so much that I thought I’d sprained it. So, I went to A&E and spent a lot of that day in a hospital bed. The doctors couldn’t find anything wrong with me other than that I was in pain. To make matters worse I was ill, to varying degrees, from September to February. The theory is that this is how the arthritis took hold of my body, because of my weakened immune system. Then in February, I was waking up screaming in agony every night, at the time I didn’t know what was going on. Neither me nor my parents were aware I had arthritis.

The doctor on call was the first to introduce the concept of arthritis but not in any meaningful way. The second he realised he didn’t need to operate on me he dropped my case immediately without another word.

In March, I had an appointment with my Paediatrician that I had to go to despite the pain, this is where the story deviates from the norm. My Paediatrician noticed I wasn’t my normal self; he had known me since I was five days old and was days away from retirement, so he was more lax with procedure. He walked out of my appointment to talk with his colleague to ask her to take a look at me. The colleague he talked to was a Paediatric Rheumatologist who noticed the similarities. She booked me for an appointment in April. Two weeks later I got diagnosed.

In a normal setting arthritis can take years to get diagnosed, the fact that it took four months to get a diagnosis is entirely because I was lucky to have a Paediatrician who knew and respected me.

My arthritis affects me daily. I have constant pain in both of my wrists; neck pain and my ankles periodically flare up. This isn’t all that affects me, but it’s what most affects me in everyday life.

I have permanent damage in my left wrist because the arthritis weakened the bones and ligaments. Every time the bones shift and move, the bones rub against each other unimpeded, there’s no barrier between them anymore. This has caused the bones to dissolve in some places. I no longer have full mobility in my left wrist because the bones have warped shape. The synovial fluid has been absorbed by the rest of my body and no longer lubricates my joints.

If you don’t know what synovial fluid is, it’s a substance that exists in synovial joints (hinge joints, ball and socket joints, pivot joints) that lubricates the joints to reduce friction between the articular cartilage when moving. The fact that I don’t have as much synovial fluid in some of my joints is because of the arthritis.

There are many different ways arthritis affects people, no two people have the same experience with it.

In my next post I am going to write about how having a chronic disability affects everyday life.

Thank you for reading! I hope this was an interesting read, and helpful to you in some way.