Campaign to make people aware of invisible illnesses
Landrake teenager Jasmine Leslie has had juvenile idiopathic arthritis when she was 10. Nnow, she has joined up with charity Versus Arthritis in a campaign to raise awareness of invisible illnesses and chronic pain on television and in film
12th May 2021
By Suzanne Cleave
A teenager from Landrake has teamed up with the charity Versus Arthritis to call for the TV and film industry to introduce a more accurate portrayal of chronic pain and invisible illness.
Jasmine Leslie, 17, looks like any other teenager. She attends Saltash Community College, is studying for her A Levels, enjoys sport, drama and spending time with her friends. But what people do not see is that Jasmine suffers from chronic pain.
She was diagnosed with juvenile idiopathic arthritis when she was seven years old.
She said: “I’ve had the condition for 10 years. A lot of people with juvenile arthritis aren’t diagnosed as soon as the issue comes up.
“It’s difficult with young children. They just complain that they’re in pain, and doctors don’t really understand that arthritis is such a prevalent thing, but it does happen.”
Before her diagnosis, Jasmine was sent to hospital after she had swelling in her knee. Her knee was drained and she was sent home, but it swelled up again.
Further tests showed she had juvenile idiopathic arthritis.
“I had never heard of arthritis before,” she continued. “I didn’t really think much about it but as I have grown up, I have kind of noticed that a young person can have arthritis and it’s quite a major thing. A lot of people when they think of arthritis, they think of it as wear and tear of the joints, but rheumatoid arthritis is different. It’s unheard of and that really needs to change.”
Jasmine receives regular steroid injections and initially was treated with a drug called Methotrexate, a standard drug for arthritis, but this is often not suitable for young people.
Jasmine said the treatment made her feel poorly, adding: “I became intolerant to it. It made me feel really ill and it would basically take out one or two days of my week every week. It just made me feel so sick, then I was put on drugs for anti-sickness – it was just a vicious circle.”
It was only when Jasmine and her family moved from Wiltshire to Landrake, that her consultant at a new hospital realised that her treatment wasn’t working.
“It still affects me now. It’s crazy how much it does affect you at such a young age.”
For a long time, Jasmine’s treatment was a case of trial and error, and she explained: “It took a big chunk out of my life.
“I was going through my GCSEs and it definitely made me lose a bit of positivity.”
In October 2019, Jasmine embarked on a new drug through a clinical trial, and her arthritis is under control – although she is still in pain every day.
“I don’t have any active arthritis, but I still have chronic pain,” she said.
Last year, with covid, meant a few of Jasmine’s hospital appointments were cancelled and physiotherapy sessions were carried out over video call. She is pleased lockdown is easing so she can get back to a normal routine.
She said: “It’s nice to have those distractions, When I was just inside, all you can do is sit and focus on your pain.”
The support of Jasmine’s family and friends has been invaluable.
“My friends and family are really supportive and helpful to me. It’s really hard for them – living in chronic pain but not looking like you’re living in chronic pian is difficult for people to understand.
“The condition fluctuates so much. For me, not being able to get out of bed or going out doing sport or theatre productions is hard. I have struggled with that. I don’t want to be complaining to my friends and family or talking about it all the time.
“That’s why I want to raise awareness of people with chronic pain or with an invisible illness. This campaign is helping to change societal attitude toward pain. At the moment people don’t understand things unless they can physically see it and it’s right in front of them.
“I’m supporting this campaign as I think it’s really important for people with chronic illnesses, particularly young people and those with invisible illnesses, to have representation in the media. By doing so, it will enable the public to have more understanding, and for those given a diagnosis to feel less lonely and more confident in discussing their disability.”
The Versus Arthritis campaign ‘The Painful Truth: A Guide to Depicting Chronic Pain on Screen’, gives, for the first time, guidance for the TV and film industry aims to bring an increased and more accurate portrayal of chronic pain.
With research findings from nearly 4,000 people with arthritis and chronic pain, as well as input from TV and film professionals, this unique guide provides information about arthritis and chronic pain (defined as pain which has lasted more than 12 weeks despite treatment or medication).
It also brings practical suggestions for accurate storylines and characters and features the personal experiences to illustrate what it’s really like that society can begin to understand, and so that people with pain feel represented, heard and seen.
Ellen Miller, deputy chief executive of Versus Arthritis, said: “Living in pain can have a devastating effect on people’s lives, preventing people from caring for their family, being intimate with their partner, and even stopping them from having any chance of sleeping well.
“The invisibility of it on our TV and film screens has a profound impact on people’s sense of self and mental health, leaving many feeling forgotten and misunderstood.
“This is not acceptable. TV and film have incredible power to shape society’s attitudes, which is why we are calling on them to better represent pain. We’ve seen how better portrayal on screen of important issues has led to greater understanding.
Now is the time for recognition and attitude shifts for chronic pain and arthritis.”
To read the guide and find out more about the campaign, visit www.versusarthritis.org/thepainfultruth