WHEN doctors told Emily Williams at the age of 12 that the agony in her legs was just growing pains, she and her mum had no reason to doubt them.
But less than a year later, and struggling to walk, Emily, from Cardiff, was diagnosed with crippling juvenile idiopathic arthritis that needed complex spinal surgery.
As her friends were out having fun, the teenager was thrown into a world she associated with the elderly, that left her depressed, physically exhausted and in constant pain.
Now, Emily, 24, is raising awareness of the condition, which affects one in 1,000 under 16s, and sharing how she turned her life around.
Emily said: “I was happy and healthy growing up, I had a great childhood and rarely went to the doctor.
“But one morning in 2010 I woke up and couldn't move my legs. I was in agony.
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“My mum thought I was pretending to get out of school, but I was serious.
“She carried me to the doctors but they said it was growing pains.
"I had lots of different tests and the results showed nothing wrong.
“I was finally diagnosed with juvenile idiopathic arthritis that has now spread to most of my joints.
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“I didn't think I would make it past 18 as I was so depressed about what my life had become, but now at 24 I’m trying to live my best life despite everything.”
Aged 13, Emily had to give up her two favourite hobbies, horse riding and dancing because she was in so much pain.
However, at first medical tests proved inconclusive. Emily felt as though she had no choice but to “get on with it”.
She said: “I was having to go to school all the time as normal as nothing was showing up on any test.
“Because I wasn't walking very well I was bullied and slowly became a recluse.
“They would mock and laugh at me, and I ended up feeling really depressed and thinking, ‘Why me?’”
In 2011, after a year of “getting nowhere” with her GP, mum Jayne paid for a private rheumatologist who diagnosed Emily with seronegative juvenile rheumatoid arthritis at just 13.
The long-term condition causes pain, swelling and stiffness in the joints, and usually affects the hands, feet and wrists.
Emily said: “I remember questioning him saying, ‘I thought arthritis only affects old people?’ I was confused and scared. I had no clue what the diagnosis meant.
“After this I was put on oral steroids as a quick fix and luckily everything started to get better apart from the pain in my neck.”
SO MUCH PAIN
Any sharp movement, such as sneezing or driving over a speed bump, would result in pain in Emily’s neck. She became scared to move due to the intense pain.
She underwent a scan, which showed an injury caused by the arthritis at the top of her spine which doctors said is usually caused by horse riding or trampolining accidents.
“I was told I needed to have surgery which I thought wouldn’t be too much trouble, but this halo-gravity traction surgery completely changed my life,” she said.
“In October 2011 I had to go on halo traction, a way to pull my head and spine up carefully, so I had four metal pins attached to my head with a metal halo around it and 20lbs attached to it in hopes of fixing my injury.
“I had to lie on my back for five weeks and have round-the-clock care.
“The nurses had to turn me over every few hours to prevent bed sores, and they had to wash me. My toilet was a bedpan. I was so embarrassed.
“I didn't have any time to process my emotions. I spent most of my days watching movies.
“Having visitors helped pass the time and while I was so thankful for everyone who came to see me, I hid how I was really feeling inside.”
However, when the device was removed, Emily was given the bad news – the halo traction hadn’t worked and the injury in her neck remained.
She had to undergo another surgery, to have a metal screw inserted in her neck to fuse the bones – luckily this surgery was successful.
After recovering, Emily had spent so much time on her back, that she had to learn how to walk again.
She was off school for a year during recovery and had to use a wheelchair.
Emily said: “I remember first walking to the chair beside my bed and being so happy to finally get up.
I was depressed but didn’t want to tell my family – I would get angry over the littlest things
“I walked further and further each day but on one walk I fainted because I wasn't used to being up and about again.
“I was in hospital for a further two weeks before finally being discharged.
“But after getting home, the nurses from physio realised I wasn't strong or well enough to be at home without their support.
“I was devastated. I had to go back into hospital for another two weeks until they thought I was strong enough again.”
Emily felt bitter that she had missed out on her teenage years when all her friends were having fun.
She said: “When I was 16 the emotions that I’d pushed down for so long started to come up.
“I was depressed but didn’t want to tell my family. I became angry and would get angry over the littlest things.
“I would verbally take it out on my mum – the person who was closest to me.
“Looking back, this really upsets me as all she did was her best, but I didn't see it like that at the time.”
After finishing school at 16, Emily started studying hairdressing at college.
She completed her first year but then dropped out due to how bad she became with her arthritis pain.
She spent the next few years battling with her health as pain took over.
While she doesn’t work, she spends her time focusing on doing her part-time online university studying.
Then in December 2021, Emily’s life took a positive turn as she met her now-fiancé online after going on a first date where they chatted in the car for hours – they instantly clicked.
They got engaged in June 2022 after a romantic proposal where her fiancé had scattered rose petals, lit candles and played their favourite song before popping the question.
Emily said her fiancé is the first person she’s been with who really understands what she goes through on a daily basis with arthritis.
The couple are “enjoying the moment” of being engaged and are excited to see what their future holds after Emily completes university and they move out together.
But for now Emily, 24, is raising awareness about her condition so other children going through it don’t feel as alone as she did.
LIVING IN THE MOMENT
She said: “It’s been a really tough journey. People can sympathise but they can’t understand unless they have it.
“I started sharing my story on Instagram @Chronicallyem13 to raise awareness of JIA to show that young people can be disabled too.
“I have tried to turn my life around and am now finally getting help with an amazing therapist who is helping me process my emotions.”
Emily is taking new biologic injections for her arthritis and is in therapy for her depression, anxiety, panic disorder, PTSD and OCD.
She’s also studying psychology and counselling with the Open University Online with hopes to become a psycho therapist to help others.
At 16, she didn't think she’d make it past 18 but now she’s living her life to the fullest.
She said: “If I get a common cold, my arthritis will flare up all my joints to the point where I can't move and I'll be in bed for weeks because of how bad my symptoms get.
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“There's never a good day but there’s always a better day. I volunteer for two organisations which help people with different types of arthritis, and I'm also engaged!
“At 16, I didn't think I would make it past 18, but now, I'm here and trying to be happy and positive about my future.”
Contact the Samaritans
If you have been affected by any of the issues raised in this article, contact The Samaritans on 116 123.
They are available for free at anytime.
Or email https://www.samaritans.org/
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