“Maybe because I was so young, no one mentioned arthritis”
We spoke to Francesca to hear her arthritis story and find out how support services have made a real difference to her life, from accessing ‘living with arthritis’ information on our website to sharing experiences with friends and family.
When were you diagnosed and how did this impact on your life?
I was diagnosed with juvenile idiopathic arthritis when I was just 16. I’d been poorly for years before this and doctors thought it might be growing pains, stress and all sorts of other things. Maybe because I was so young, no one mentioned arthritis.
I was finally diagnosed at Great Ormond Street, and within two weeks I was on treatment to start coping with the disease. The news was a huge shock and I had to adjust massively.
Starting methotrexate and trying to get through GCSEs was a horrible combination. It improved my joints but it didn’t control the arthritis completely. I’d been predicted As, but when I was put on methotrexate, my teachers said: 'Just do your best and see how you get on’. I don’t think they expected me to do so well. I got all Bs, which I was very pleased with.
I later started studying biomedical sciences at Westminster University, but my arthritis was really bad and made it too difficult for me to continue living away from home while studying. I decided to move back home and apply for an Open University course in counselling and psychology.
I’m now studying psychology at Greenwich University because I want to help others who need support. I've learnt from my own experiences what an important area this is.
How are you managing your condition?
Most of my joints are quite well controlled with medication now, but over the years I’ve had periods of remission and very severe flare-ups and lots of surgery. My jaw joint is the worst joint affected, and this can make it difficult to do simple things like eat and speak.
I’ve been on so many different medications, and every time I’m put on a new one, I like to research all about it and that’s what I’ve used the Versus Arthritis website and leaflets for. I know I can trust this information, and it’s really helped me to understand the different drugs and therapies available to me.
My mum and dad also like to take the leaflets home, so they can read and understand the changing treatments better.
What support has helped you?
When I was first diagnosed, I found it really tough. It was almost like a bereavement. I had lots of ideas on what I wanted to do but being poorly from quite a young age meant I couldn’t do the things I wanted to do when I wanted, and I had to get my head around this.
I’ve had a lot of counselling over the years to come to terms with the illness. This has been and is still such an important coping mechanism for me. I talk about my illness with somebody and make coping strategies for the harder times.
I’ve met a lot of people through doing stuff with Versus Arthritis and those are the people that I speak to all the time. It’s so lovely because I can talk to them and they totally get it.
When I was younger, I used the website’s information on young people and schools a lot and that was really important for me. I think that’s when I first thought about going to counselling because it was mentioned in the different therapies to try.
I follow the charity’s social media pages too and, on those days when I can’t do anything and I’m scrolling through what everyone is up to, seeing other posts from people with arthritis sharing their experiences, it’s nice to know I’m not the only one. There are other people my age, or younger than me, who are going through a very similar thing. It’s really comforting.
I’m very lucky with my friends and family and the university, and the support I have. I made it very clear when I went back to university for the second time that I might struggle, and they’ve been amazing, which has made a huge difference.
If you had one piece of advice for someone with your condition, what would it be?
Oh, I’d want to give them so many pieces of advice! I’d say try to stay positive because there are so many things that can help. It doesn’t have to be a life sentence of pain and not being able to do all the things that you want to do, even though it might seem that way.
It’s shocking at whatever age you are but try to remain positive because so many things can happen. It’s just a different way of living.
I’d also say reach out to everyone that wants to help you. I think it can be difficult to accept help at the beginning but the more your friends and family and the people around you understand, the better they’ll be able to support you and the better you’ll feel. Definitely talk to people as much as you can.
We’re here to give you strength when you need it. You can call our helpline on 0800 5200 520 for advice and support.