We need to make sure people with RA get the right support – delays can have serious consequences – Anoushka’s story

Written by Anoushka

I had a bumpy road to diagnosis. It started when I was 18 and looking forward to starting my nursing degree. I was on a family holiday, visiting relatives in India when I woke up one morning with a swollen knee. At first I thought I’d just bumped it while we were travelling, but it kept getting worse.

When I got home, I got it checked out. But a 10-minute appointment just isn’t enough time for a GP to spot the warning signs, especially in young patients who seem otherwise fit and healthy. It was such frustrating time – I was in pain, struggling to walk and I kept telling people that something wasn’t right.

I was on crutches by the time I was diagnosed, and even after that it took a while to be referred to the right specialists and for them to find the right medication for me. And by then the damage had been done.

I managed the first year of my nursing course, but in the second and third year I was very unwell, and needed a lot of time off. I was on crutches by the time I was diagnosed, and even after that it took a while to be referred to the right specialists and for them to find the right medication for me. And by then the damage had been done. I had my first operation – an arthroscopy on my left knee – in 2010, and then another operation on my right knee not long after that. Since then I’ve had 14 essential surgeries because of the damage to my joints, and I know I’ll need more in future.

I needed to take an extra year to finish my nursing course, and over the years I’ve had to take a lot of time off work because of my health.

Having a long-term condition like rheumatoid arthritis can feel very isolating, especially if you’re young. People would ask me ‘why are you on crutches?’ I felt that nobody else could understand what I was going through, and I’ve often felt very lonely.

Being so unwell made studying very difficult – I had to push myself twice as hard. I needed to take an extra year to complete the course, but I did graduate. And since then I’ve had to balance my career with my health. I was worried that I wouldn’t be well enough for the demands of a nursing job, so I worked as a receptionist at a sports club, and at a London hotel for a while. But I really wanted to use my skills and my qualifications, so I went back to the hospital where I trained as a student nurse. I volunteered at first, and after about six months I got a position as a healthcare assistant. But in the last year and a half I suffered a spinal cord injury, which has caused more problems and more time off work.

Knowing that help is out there

If you’re in that position, and you’re finding it hard to ask for help, NRAS provides excellent support and advice on rheumatoid arthritis. Their information booklets provide detailed information every aspect of living with the condition. And the online community and various in-person support groups are a space for people to share their experiences, which can be a big relief.

I’ve learned to be my own advocate

I’ve always used the resources on the NRAS website, and the information booklets to learn more about my condition. They’ve helped me to understand more about rheumatoid arthritis, how it affects the body and the different medications that are available. This has enabled me to have better conversations with medical consultants and other health professionals. I’m better informed, I know what questions to ask and I’ve gained more confidence in speaking up for myself.

It’s so important that we continue raising awareness about rheumatoid arthritis.

Especially with young adults, there’s still a misconception that if people look fit and healthy it can’t possibly be RA.

People shouldn’t feel afraid, anxious or embarrassed about approaching their GP or an appropriate healthcare professional, if they’re worried they may have RA. And we need to make sure that GPs have enough time to listen to their patients. Especially with young adults, there’s still a misconception that if people look fit and healthy it can’t possibly be RA. But it’s vital that people are referred to a specialist in the first 12 weeks. Then, if they have got arthritis they can get started on the right medication, so hopefully they won’t have as much damage to their joints as I’ve had. The earlier a person is diagnosed and started on the right treatment, the better their quality of life will be.

If you find yourself relating to Anoushka’s story, sharing your story can not only help you, but others living with RA. Why not get in touch with us? Email fundraising@nras.org.uk or alternatively message us on social media via Facebook, X and Instagram.