“It would be wonderful if I could help just one person.”

12 October 2020

Our trustee, Juliette Scott has worked with Versus Arthritis for over 6 years. Here she tells us about her mum, Libby, who lived with rheumatoid arthritis (RA) for over 40 years.

Listen to Libby’s inspiring top tips on ways to take care of yourself and get the support you need.

Why did you decide to be a trustee for Versus Arthritis and tell us about your mum, Libby?

I wanted to give something back in an area which I’m very passionate about and to be able to share my knowledge and work experience with the charity. I previously worked in Customer Insight and Analytics for companies like eBay and dunnhumby.

Mum was diagnosed in the 1970s with rheumatoid arthritis, she was in her 20’s and from a young age I saw the impact that arthritis can have on all aspects of someone’s life. She lived with the condition for over 40 years and we sadly lost her last year to cancer.

When I was going through her things, I found her written diaries and notes created for research we were undertaking at the charity, and these are what became Libby’s top tips. I want to raise more awareness about arthritis and to show it’s not just something old people get.

Why do you think it’s important for people to talk about arthritis and share experiences?

It takes strength to live with arthritis and everything was so different when mum was diagnosed. This was before anti-TNF treatments!

She was at the height of her career and found herself struggling with pain in her shoulders and hands. Following tests, she was diagnosed with RA and was told she’d be in a wheelchair within 2-3 years. She was adamant that this wasn’t going to be the case. 

Treatments have much improved today but there’s still no cure. If you’re diagnosed with arthritis, you have to learn to live with it. Having conversations and knowing you have support is super important so that you can take the best care of yourself.

Millions of people live with arthritis and there’s still so many misconceptions. We need to recognise the impact, raise awareness with people around us, in government and across society. To do this, we need to be talking about it and sharing experiences.

In Libby’s top tips she talks about seizing the day, how do think this mindset helped her manage her condition?

Mum had to have significant surgery including 10 neurosurgery operations and the ‘biggy’ was when her c1 and c2 vertebrae had basically collapsed. These are your first two vertebrae at the top of the cervical spine connecting the neck and head.

This was a massive 12-hour operation which was risky but without it she would have died. Luckily, she got through it and we joked that she was a ‘bionic’ woman, as she had so many pieces of metal inside her.

Arthritis is challenging and even though mum had these operations, many of symptoms were invisible. That’s the thing with arthritis, people can mostly look well.

Mum started to do mindfulness to learn how she could live in the best way with her arthritis. This was in the 1980s when the concept of mindfulness wasn’t as mainstream as it is today.

For her, the relationship of the mind and the body were key to try and strike a balance in her life. For example, mum found it hard to get going in the morning. She’d have to take her time, have a cup of tea with her many pills in bed, then get dressed and provide a little boost by applying some lipstick.

She believed that it’s massively important that you need to find what works for you and what might help you feel better in this moment, today.

What would your advice be to others who either have arthritis themselves or know someone who has?

Take a look at the support Versus Arthritis offer and find what suits you, whether it’s the helpline, young people’s arthritis tracker app or online community.

We need to keep talking about arthritis, to do more research, to share advice and campaign for change to enable people with arthritis to live better. You are not alone; we are all here to support each other.

Mum would say, delve deep, be as open as you can and find what support works for you. From Libby’s perspective she learnt you might not be able to control the arthritis, but you can take responsibility. Build your knowledge, be curious and if there’s anything you are not sure about, ask questions.

Living with arthritis is a marathon and not a sprint - and we all need a little strength to help each other.

Libby’s top tips

Listen to Libby’s top tips and share it with your friends and family. If you know someone with arthritis, check in with them to see how they are getting on and let them know you are there for them.

It takes strength to live with arthritis

We all need a little strength sometimes. The strength to speak about your experiences, like Libby.

If you agree it takes strength to live with arthritis - add your name now.

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