“I do get scared of being in pain… but try not to let it stop me.”

11 May 2021

Beth, 25, was diagnosed with spondyloarthritis in 2020 but has lived with rare conditions, Axenfeld-Rieger syndrome, costochondritis, and glaucoma since she was young. She tells us why it’s important for young people to ignore the haters, be proud of their journey and advocate for themselves.

“I couldn’t move or breathe and could barely cry.”

When I was in primary school, I got bad chest pains and people brushed it off as me being unfit or as a pulled muscle, but it continued and slowly got worse.

In 2015, I got hurt while at work. I woke up the next day and my chest hurt so much I couldn’t move or breathe and could barely cry.

My mum had to do everything for me and took me to see the doctor, who diagnosed me with costochondritis. They said it would be gone in two weeks, but months would go by, I’d have a bad flare up and would be in pain from doing simple things, like lifting my bag awkwardly or sleeping.

I went through different pain medication and in 2018, I was referred to rheumatology. They did an MRI in 2019, and then in 2020 I was diagnosed with spondyloarthritis via a telephone appointment.

They put me of sulfasalazine but I had bad side effects. Then they put me on methotrexate and because it made symptoms a little better, they confirmed the condition. They said it’s quite odd to have it in my chest, which is why it took so long to diagnose.

“Sometimes doctors forget you’re human.”

I also have glaucoma and Axenfeld-Rieger syndrome. It’s rare to have either as a young person but I’m used to having these rarer diagnoses. It took me more time to realise that my arthritis is going get worse.

Just before Christmas, the doctor said that I don’t actually take a full breath. The impact of chest inflammation on my lungs and having injections scares me, but I try not to think about it because I get quite bad anxiety. I just try to get on with life because if I sit and worry, that’s all my life would become.

Sometimes doctors forget you’re human and almost want to trump the other professionals – it feels like with every new speciality it’s competitive and they always try to find something new.

“I do get scared of being in pain… but try not to let it stop me.”

My family are very close. My sister Lucy is my best friend and my rock. She’s been ill from age seven, so we’re very open and supportive of each other. Lucy couldn’t see as she normally would without her glasses since having surgery, so when we go shopping, she has to push the trolley and I can’t push the trolley, so I pick out the items… we’re a match made in heaven!

My work are really supportive; my colleagues are always looking out for me and making sure I’m not overdoing things. I’m lucky that they’re so understanding. I do get scared of being in pain if we’re working outside in the cold or doing manual labour, but try not to let it stop me.

My best friend Sophie is never judgmental and is always caring. My friends Josh and Freya are kind and have a lot of empathy. They make it easier if I’m fed up – if I want to moan, I can moan!

“Just because you can’t see a condition doesn’t mean you’re not in pain.”

Some people I’ve come across who aren’t in my close circle of friends have questioned me. They’ve said, “it can’t be that bad if you’re young,” assume you’re lazy and boring when I’ve not been able to go out or drink. I’m not boring, I’m ill, and some of my medications make me sick and tired!

I tend to avoid those people. They don’t understand how unpredictable flare-ups are. One day it’s fine to do something and the next day you can’t get out of bed. In school, you learn about broken bones but not invisible conditions, I wish it were taught in school.

I don’t want to feel ‘disabled’ but at the same time I do have disabilities and I’m proud that I do things and live my life. I’ve applied for a blue badge and I’m not ashamed.

At the moment I can’t keep fit. In 2017-2018, every time I’d go to the gym my chest would be so sore. I’m hoping with new medication I’ll be able to get back to exercise. I can’t even wear a bra sometimes because the tight wire hurts. Sneezing or moving a heavy chair is a big deal for me and can really hurt.

“Ignore the haters and believe in yourself.”

Talk to people who are closest to you. If you feel like something isn’t working for you, keep going back to doctors until you have a plan that you’re happy with and are taken seriously. It’s your life so do everything you can to make the best out of the situation.

Ignore those who make you doubt your pain – you know your body. You’re living your life twice as hard as someone without your condition. But you’re doing it and you’re doing it quietly. Give yourself kudos, ignore the haters and believe in yourself.

Young people with these conditions overcome things that some people don’t experience until they’re in their 60s. We’re dealing with diagnosis, medication, and a pandemic that is already stressful enough. Young people deserve more credit than they get!

Our services

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.

Find out more about our Young People and Families service. 

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