FOLLOWING recent findings that only one in four Britons know what rheumatoid arthritis (RA) is, two Newport women have spoken out about their daily struggle.

The research, carried out by National Rheumatoid Arthritis Society (NRAS), found that 30 per cent of more than 2,000 people couldn’t define RA – a progressive, incurable, autoimmune condition which affects one per cent of the UK adult population – often confusing it with osteoarthritis.

Osteoarthritis is caused by general wear and tear, whereas RA is when one’s immune system attacks the lining of the joints, causing inflammation, chronic pain, stiffness, and a whole range of life-changing symptoms.

RA can affect anybody at any age, even children. Shelley McGuire was diagnosed when she was 27 years old, and Helen Sebury was 26 years old when diagnosed; both are now in their forties.

Ms Sebury was told by nurses she was ‘too young’ to have arthritis prior to her diagnosis.

“More awareness is needed about this complex condition because, at a glance, you wouldn’t know anything was wrong,” said Ms McGuire.

“I have a Blue Badge and one day this elderly couple confronted me for parking in a disabled space. They were so rude; it made me feel like I was in the wrong.

“I just said ‘don’t judge a book by its cover,’ got in the car and burst into tears.”

RA is ‘unpredictable’ as there will be good days and bad days, and there is no cure.

“Sometimes your head wants to do something, but your body says, ‘no chance,’” added Ms McGuire.

Raising awareness of RA could also mean a quicker diagnosis – the quicker someone gets help the less risk of disability there is.

Ms McGuire said: “Not a lot was known about RA when we were diagnosed – I left without even a leaflet.

“RA doesn’t just affect your joints. It affects your immune system, your heart, eyes, lungs, and kidneys. A lot of the medication used for treatment involves chemotherapy, which has many side effects.

“It’s difficult to do things others might take for granted – like opening a jar – and it’s different for everyone. Some treatments might work for one person, but not others, meaning you have to find a new pathway.”


The medication those facing RA take can affect their sleeping pattern, and lower their immune system making them more susceptible to illnesses, meaning it can be ‘dangerous’ to see unwell friends.

Treatment can also be unpredictable – Ms McGuire’s stopped working after five and a half years, meaning she had to try new methods which often failed.

High doses of steroids are used to avoid flare ups, but these have multiple side effects such as making bones brittle and increased appetite; this is an issue as extra weight puts more pressure on the joints.

"It's a vicious cycle," said Ms Sebury who has had both her knees replaced and is awaiting surgery on her sprained foot; she also sprained her neck last year following a nasty fall. Her RA has also brought on osteoarthritis and carpal tunnel syndrome.

She’s awaiting surgery on her foot, but lower immune systems often mean delaying the process which Ms Sebury said can leave her feeling ‘deflated.’

Both women hate needles but have to inject themselves with the steroids, which can be a struggle as their hands often seize up.

“I suffer anxiety and have to mentally prepare myself whenever I’m being injected,” said Ms McGuire.

“Needles make me feel like I’m going to have a panic attack – people tell me I’m brave, but I don’t feel it.

“If they could see me crying in a cubicle, they’d not think I was brave – the little kids who face RA are brave. I feel like after all these years I should cope better.”

South Wales Argus:

(Shelly McGuire and Helen Sebury. Picture: Chris Tinsley)

The pair support each other every day, and are part of Newport Arthritis Support Group, which welcomes those living with any form of arthritis, plus their families and carers.

This support network is crucial, as anxiety and depression are common side effects of RA, plus it offers useful help and advice.

Ms Sebury said: “You have to keep a positive mental attitude and avoid isolation.

“I really enjoy knitting, colouring books and photography – you need to find the balance between movement and rest.

“I went to Ibiza with my son last year, and I’m planning to go to Turkey this year but I’ll need a tri walker at the airport.”

Ms McGuire also works with charity Versus Arthritis to make sure Wales puts RA on top of the agenda and lobbies to provide an RA paediatric services in Wales, as the condition can strike at any age.

Versus Arthritis is campaigning to raise awareness of the Access to Work scheme and will host an event at Westminster on July 2 - people are urged to write to their local MP to encourage them to attend.

You can call the Versus Arthritis helpline on 0800 5200 520.