Arthritis can affect anyone, at any age. So why is it that adverts and leaflets frequently show images of greying, elderly people with the condition? The NHS states that around 15,000 children and young people in the UK are affected every year by arthritis. But that figure doesn’t take into account people in their 20s and 30s who are diagnosed, too. The winter months can be particularly difficult for those living with arthritis, as the cold weather can often cause ‘flare ups’ – particularly bad, painful episodes.
We spoke to three young people living with arthritis, who shared their experiences of coping day-to-day, as well as their thoughts on the stigma around invisible illnesses.
Hayley Woodland, a 27-year-old teacher, was diagnosed with juvenile idiopathic arthritis at the age of three. Doctors originally dismissed her swollen knee thinking it was just a bump – but when she returned to the hospital a year later, the arthritis had spread.
Hayley tells Metro.co.uk: ‘In 1994 there was still a bit thing around the fact that it wasn’t a “young person’s disease” and it wasn’t very likely to be that. We were lucky that we found someone a bit more specialised and I started getting treatment from about the age of three – but by that point it had spread from a knee to literally everywhere.
‘Luckily, that isn’t the case now for children being diagnosed, as they are spotting it so much earlier. But back then it was ignored, which was frustrating. I have swan neck in my fingers. It’s a condition where the tendons in the fingers couldn’t develop properly because of the arthritis, so they are in the wrong place. So I can’t bend my fingers pretty much at all and that happened from very young age.
‘It’s now proven that no child being in that situation will get swan neck. There is no reason for that to happen anymore because they know how to stop it.
‘I do sometimes reflect back and think “Oh I’m angry that wasn’t the case at the time”, but that’s how medical research goes. You can’t always be lucky enough to be born at the time when things can be stopped. But I am lucky enough to still be young enough that we are able to find treatments.’
Growing up Hayley says she was only in school around ‘30-40% of the year’, due to her arthritis. The rest of the time she was either in hospital or at home with her mum. Reflecting on her experience now, she says her school showed a lack of understanding towards her condition. She says: ‘I used to think it was the older teachers and older generation at the time who didn’t understand it – who saw it as “not a thing children get” and that my mum was exaggerating.
‘I think it was my Year 4 teacher – quite a young girl, probably a few years into teaching – she was atrocious to me. One day I had to go in in my wheelchair – I used it sometimes but that often – but I had to go in my wheelchair that day because I wasn’t feeling well. Then the next day it wasn’t so bad, so I didn’t need it and I went in as normal and she had a massive go at me. She was adamant that it was proof that we were lying about everything.
‘It’s that attitude that we face quite a lot – this idea of either you have it or you haven’t. There’s no awareness of the fact that that’s not how arthritis works. I think that’s something everyone with arthritis faces, people seem to find it hard to get their heads around the fact that it isn’t a consistent disease.’
Hayley says advances in medicine – compared to when she was diagnosed in the 90s – make things a little more promising for those living with arthritis. She recently underwent a hip replacement – which was something she was told 10 years ago would never really be an option. Her new ceramic hip will last her around 30 years.
Chloe Elliott was diagnosed with arthritis in 2013 – at the age of 23. She visited the doctor after suffering with severe body pain, leaving her unable to walk, lift her head or use her hands. Following a blood test and a session with rheumatologist, she was diagnosed with psoriatic arthritis – which develops from skin psoriasis. Chloe says: ‘I had to leave my job in fashion buying and move back home as I was completely unable to do anything for myself.
‘Now, I still have daily pain, some days are better than others. I take an anti-TNF injection once a month to help with my symptoms which include joint pain, extreme fatigue, and nausea. I try to keep as comfortable as possible, sleep as much as I can and as often as I need to. I’m lucky to be self-employed so I sleep when I can.
‘I have no idea how people in full time work – in an office for example – cope with having arthritis and not being able to rest when they need to. I also take pain relief which helps. ‘Keeping warm is absolutely vital too, as my body is definitely more likely to flare in cold weather.’
In terms of day-to-day activities, Chloe says living with arthritis has changed aspects of her life, such as socialising with friends and exercising. She says: ‘It takes a lot of my social life away. I am forever having to cancel plans or rearrange because I never know how I’m going to feel on the day. ‘I’m unable to exercise like I used to – I still try but it’s really painful for the entire week after I do any exercise. ‘I think many people with arthritis will agree with me when I say that you can go out and do one nice thing you’ve really been looking forward to, and you then pay for it for a solid week because it has taken everything out of your body.’
Chloe agrees with Hayley that more needs to done in terms of education around invisible disabilities, such as arthritis. She believes this is the best way to tackle the stigma and attitudes that the condition only affects ‘older people’.
She says: ‘I have been challenged whilst sitting in the accessible seats on a train and I have a disabled person’s railcard. I have also been challenged when parking in a disabled bay and I have a blue badge. ‘Unless I use my crutch – which I have to use a lot of the time – people don’t see the illness so they automatically assume that one isn’t there. Being challenged on your illness is absolutely humiliating and a complete violation. You can not determine someone’s health at face value. ‘I think it’s about more education, more people talking about it and more people purposefully educating themselves about invisible illnesses. It’s not my job as a disabled person to educate you – you should be doing it yourself. ‘I must admit that I myself thought that arthritis was for the elderly before I was diagnosed with it.
‘I remember phoning my mum after I’d seen the rheumatologist and telling her I thought we needed a second opinion and it couldn’t be arthritis. Thankfully, marketing is finally changing to show a range of people with the condition thanks to charity Versus Arthritis. This isn’t a condition purely reserved for the elderly. ‘
Paige Calvert’s arthritis derives from Crohn’s Disease – an auto-immune condition. At the age of 27, she was diagnosed with enteropathic arthritis – which causes inflammation surrounding the tendons and soft tissues around the joints. She has this in her wrists, knees, shoulders, elbow and lower back. The winter months can be particularly challenging for Paige, as her arthritis tends to flare up when the temperature drops.
She says: ‘Coping day-to-day depends on the pain level, as some days I can feel achy and it’s bearable and other days it can really affect my mobility and the pain can be disabling. ‘On a fairly good day, I just try to keep warm, rest when I feel fatigued and stay as active as possible. ‘On a bad day, it can be mentally challenging but I manage it the best I can. I use joint pain relief gels, hot baths, hot water bottles and pain relief, as well as lots of rest. It’s about knowing your body is responding in the right way so that you don’t injure yourself or make the pain worse. ‘It can mean making sacrifices on bad days and cancelling plans but it’s important to put your body first.’
She adds: ‘In winter, I find my arthritis really flares up and I have learned to invest in good thermals when going out and keeping warm wherever possible. The change in temperature from cold to hot can also make inflammation and pain worse for me so it is challenging most days. ‘It doesn’t stop me on good days, but on bad days it definitely has a huge impact on my activity level. ‘Having it in my knees is the most disabling because I struggle to walk without it being painful, so when that flares I have to have help getting up and down the stairs.’
Paige says arthritis is a misunderstood condition and that people with invisible disabilities (such as arthritis) often struggle day to day, due to a lack of awareness. She says: ‘Since being diagnosed I have had many reactions where people assume I am too young to have arthritis. I have to explain that anyone at any age can develop it as it’s a form of autoimmune disease.
‘It’s getting better with the help of charities like Versus Arthritis but there is still a way to go. I also carry around a “please offer me a seat” disability badge from TfL and I wear it on bad days. I’ve been glared at and even had negative comments made when people see me with it on, waiting for someone to kindly offer their seat. People can assume you are putting it on because it’s invisible.
‘I’d love to see people understanding invisible illness and invisible disabilities because it would make our lives a little bit easier to not have to explain our struggles constantly.’ Charities such as Versus Arthritis are working to tackle this stigma around arthritis. They also offer advice for anyone living with the condition, such as how to cope with seasonal flare ups.
https://metro.co.uk/2019/11/09/from-stigma-to-addressing-invisible-illnesses-young-people-share-what-its-like-living-with-arthritis-11040563/
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