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| Miss T at 2 years old with her ankle in plaster |
When this photo popped up in memories from 10 years ago, a whole heap of unexpected emotions flooded in.
How different life was then. The naivity of thinking it was just a broken bone that would soon heal and normality resume. How wrong we were.
10 years ago was just the beginning of life being different forever in our family.
It would be a little while longer before she got her official diagnosis of Juvenile Idiopathic Arthritis and that meant a few more weeks of living with the unknown.
I remember the confusion and worry escalating as it was becoming apparent that her foot wasn't healing. Wondering what on earth could be wrong with it and why didn't the doctors know.
I remember the relief that came with the diagnosis. But also I remember how tough the early days were and the focus we had to have on getting through it - getting to grips with the medication, the appointments, the scans and tests and treatments and having timers on my phone all through the day to administer medicines 11 times a day at one point.
In truth, there wasn't time to feel sad or to really process what was happening. It's only now that I see photos of just how young she was when going through this that my heart breaks.
It's when I see other children being diagnosed at age 1, 2 and 3 that makes me realise how young Miss T was when her life changed forever. I cry tears for these children that I wasn't able to cry for Miss T. But at the same time, I want to tell them that things will be ok. It somehow gets easier. That there is so much hope for a brighter future nowadays than I had with my own JIA that I was diagnosed with when I was a child myself.
But I also know that still entails a reality that is often far from 'normal' - the injections, medications, appointments, physiotherapy, blood tests, other MRIs, scans and x-rays, the stigma of being different, the flare ups, the bad days, having to explain to others, the list goes on and on.
It's so important to remember not to let myself get bogged down in the challenges but to also be grateful for the good stuff. What could be 'good' about having JIA? Of course, it's something we would never wish upon anyone, but me and Miss T have learnt to look for the silver linings.
When I was diagnosed with JIA myself at the age of 10, I literally knew no-one else with the same condition. I was embarrassed by the questions I would get from others and the awful misconception of arthritis only affecting the elderly which everyone seems keen to mention. I lost count of the number of people what would respond with "my granny has arthritis".
Now both me and Miss T have friends both in the UK and now all over the world who have JIA and understand what living with JIA is like. Having a friend with the same condition takes away all of the initial 'having to explain' and the judgement and stigma that we sometimes feel from others.
Having that connection means that she and her friends can chat about anything and everything without even having to mention 'JIA' but there's an underlying connection and understanding knowing what each other goes through in terms of what 'normality' is like.
There are activities that Miss T would never have thought of trying if it wasn't for her JIA. Horseriding was originally recommended to her as a way of strengthening her core and now she adores riding. Perhaps her love of books and reading has been encouraged because of the times we spent waiting at appointments with a book or magazine to read through.
She uses her guitar to write songs as a kind of creative therapy and is able to keep playing guitar even when her legs are painful.
Her digital artwork has come on leaps and bounds - perhaps because she finds it easier to draw using digital tools rather than paint, pens, paper for example.
After relative stability on medication for a long while, last year was a difficult year of flaring whilst changing medication. It meant changing a lot of things in life to get through that flare. Miss T suddenly needed support with every aspect of life right down to brushing teeth, getting dressed and getting in and out of bed. She ended up back in a wheelchair, which we had hoped she wouldn't need once her JIA had been better controlled previously.
It affected her schooling, her school attendance, her fatigue levels, her hobbies, what we could do as a family - quite literally everything.
As her new medication kicked in and things began to improve - it also made us very grateful for the good times and the good days.
And over the past 10 years, our lives as a family have changed...
When we saw what little support was available when T was diagnosed. When Richard with his scientific background searched and found there were still no answers to the questions I had when I had been diagnosed in the 1980s, and when Miss T faced the same misconceptions of "only old people get arthritis" - we knew we couldn't let other people go through the same thing.
Juvenile Arthritis Research was born 7 years ago and we haven't looked back since. Now people can receive information and support when first diagnosed, families can connect with each other through online and face to face activities, and having become recognised internationally for the work we do, we can push forward towards finding those answers to the questions that parents have and pushing forward towards a cure for this cruel disease that can rob children of so much.
One of the things I personally struggle with is getting that balance between sharing hope - A diagnosis of JIA isn't the end of the world - your child can still do everything they ever dream of. And recognising that it's still a rough journey and one that is unfair for children to have to travel. Recognising that whilst effective treatment and long-term remission can be a very real hope for many, that for some despite trying many treatments over the years, they are still battling with daily pain. Recognising that occassionally, though far less common these days, some children will still end up needing joint replacement due to either delayed diagnosis, or when treatment has been ineffective for example.
Understanding that the systems and society that we live in is far from perfect and that there is plenty of room for improvement. Miss T's stints in a wheelchair always remind us just how inaccessible life can be for wheelchair users. Having to wait months due to admin delays to start a new medication isn't right but is somehow accepted as inevitable. These are all things that need to change.
So I suppose 10 years on, I'm in a place of relecting on the good things, the incredible things, the things that may have once seemed impossible, happening. Whilst also recognising there is still a long way to go.
Just as when we first started Juvenile Arthritis Research because of the urge to do something rather than just moan about what wasn't right, we continue to move forwards and do what we can to help those improvements happen, to collaborate with those research projects with the hope of further breakthroughs in the treatment of JIA care and we do it with a very real hope and belief that if enough people are putting the priority in the right place, then we truly can get closer to a cure for JIA which is ultimately the aim. Because I should never have had to suffer with arthritis through my teens with what I went through. Miss T should not have her childhood disrupted with JIA the way it has been, and we want children in the future to be free from the pain and additional burdens that JIA brings.
So 10 years ago, our lives looked very different pre-JIA, now as a full-time volunteer with Juvenile Arthritis Research, it is no exaggeration to say that pretty much every moment of every day is filled with JIA in some way. I hope and pray that in 10 years from now, I might be able to write a blogpost to say that JIA is a thing of the past. Let's push forward towards what matters most - a cure for JIA!
