What do you wish people knew about your condition? Six young people tell us.17 March 2020
On the 18 March every year is World Young Rheumatic Diseases day – or WORD day for short.
The aim of the day is to raise awareness of the fact young people get rheumatic conditions too, with an emphasis on general awareness, research and the importance of early diagnosis.
To highlight the impact arthritis can have on children and young people, we hear from six young people who all volunteer with our charity whether that’s through our young person’s advisory panel or our face-to-face young people and families services.
Sammy is 23 and was diagnosed with juvenile idiopathic arthritis (JIA) when she was 11. JIA is a form of arthritis that affects children under the age of 16, and one in every thousand children in the UK have it.
“If I were to describe my condition to people, I would say: 12 years of pain. 12 years of embarrassment. 12 years of pretending to be okay - trying to catch up with everyone. 12 years of frustration of not feeling okay, whilst acting like I am.
“For those 12 years, I have struggled with the embarrassment and having to explain myself to others, especially at school when I had to use a walking stick. It was difficult and uncomfortable to explain for sure.
“I am now passionate about educating people on what the condition is, so others like me don’t have to explain themselves all the time. It’s been especially difficult for my friends to understand that I am bouncing around one day and can barely move out of bed the next. I want people to understand that it isn’t because we are lazy or because we overdid it; it is out of our control.”
Meet Suruthi: she’s 21 and currently studying for her Masters. She has juvenile rheumatoid arthritis and was diagnosed at just three years old and has been managing with her condition since.
“One thing people struggle to grasp, is the unpredictable nature of my condition. Some days I can be very active and go through my day just fine but on other days, I may struggle to even leave my bed as my joints can be very stiff and swollen.
“There needs to be a lot more awareness about the disease, so people are more educated and others like myself are no longer questioned on why we have ‘an old person’s condition’.
“This is why WORD Day is so important!”
“I am 20, I have hypermobility syndrome and chronic pain syndrome and I was diagnosed in 2015."
I wish people knew that just because I’m young and look relatively healthy, it doesn’t mean that I’m not in pain and that I don’t need that seat on the bus or train.
“I wish people understood that young people can have musculoskeletal/rheumatic conditions too.”
Alex is 24 and has ankylosing spondylitis (AS) also called Axial Spa.
“I was diagnosed with AS last year but have had symptoms since I was 16.
“Lots of people say to me, you’re young and fit! But they only see me on my good days. People don’t see the bad days, where I’m in pain unable to get out of in bed.
“Invisible illnesses are hard to explain as people don’t see it physically. I look young and fit, but my body on the inside is broken. My body hurts all the time, it’s just different varying degrees of pain.
“I also get people who say to me ‘hope you get better soon!’. I know it comes from a good place, but I have to remind people that I won’t ‘get better’. I will live with this for the rest of my life, and there is currently no cure.
“I wish people understood that AS is a progressive condition, meaning that it gets worse as time goes on. I think it’s important to be mindful of this when speaking to other who have chronic conditions, it’s better to say things like ‘I hope the pain eases soon’.”
"My name is Cerys and I’m 17 years old. I was diagnosed with enthesitis related arthritis in 2015. I had this diagnosis taken away a year later and I was then finally diagnosed again in 2017 with juvenile idiopathic arthritis (JIA).
"One thing I wish people knew and understood about arthritis is - when people come up to you and say ‘oh, you’re too pretty to have that or your too young’, they think it’s a complement.
"I may look fine today at that point, but they didn’t see that it took me 3 hours to get out bed this morning. Then the struggle it took me to get ready for the day, they just don’t understand the impact a condition like this impacts on your life.
"I wish my GP and specialist doctors had taken me seriously and acknowledged what I’m going through. All they had to do was listen, instead of brushing it off as growing pains. An earlier diagnosis would have meant that I’d be in a much better place now."
"I am 16 years old and I have JIA. I was diagnosed when I was 7 years old.
"I wish people understood that it it’s an invisible illness, so I may look well and healthy on the outside but, I’m not.
"Although I always try to put on a brave face, enjoy myself and do the things I want to do, I’m in constant pain and find it difficult to cope. I wish people would be more thoughtful."
If you or a family member under the age of 25 has arthritis, we run a Young People and Families service that provides information and support and puts on a range of events across the country.
Our service helps young people and children offers advice on how to live well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.
You can find out more about what’s going on in your area or contact your local Young People and Family service.