How three friends with juvenile idiopathic arthritis found each other

21 January 2021
Tara and her friends she met on Arthr's Place.

Arthur’s Place is an online magazine and social network for young adults with arthritis. When Tara, Francesca and Lucy joined the Arthur’s Place Facebook group, they hoped to connect with others living with arthritis. Little did they know they’d meet best friends for life. They tell us why their mutual support and understanding is so important.

Can you each tell us a little about your diagnosis and your journey before you met each other?

Tara: I am 22 and was diagnosed with juvenile idiopathic arthritis (JIA) at the age of one. It mostly affects my knees and ankles.

My parents took me to the doctors because when I started to learn to walk, I suddenly stopped wanting to learn and wouldn’t stop crying. They also noticed one of my ankles was swollen.

Throughout my childhood, my condition would go through periods where I would feel like a healthy child, but then my joints would majorly flare out of the blue and I would need steroid injections.

I had my first round when I was seven years old and over the past 18 years, I’ve had 13 hospital visits for these injections. I've been on methotrexate injections since I was 12 and also started Benepali injections in July after two bad flare-ups to try and control the condition.

Francesca: I’m 21. I was diagnosed with JIA when I was two and a half years old, it was in all of my joints.

My parents noticed things weren’t right when I woke up screaming because I was in so much pain and wasn’t able to walk.

After going to many doctors' appointments and A&E trips with extreme swelling in my knees, one doctor told my parents that in the future my knees would have to be broken and reset, as they were so badly deformed due to the swelling.

Thankfully due to treatment this wasn’t the case. I was referred to Birmingham Children’s Hospital for all my further appointments.

I had 3 steroid injections there when I was having a flare up. The most I had at one time was 29 injections into all my joints as the swelling was so bad.

For a couple of years there was quite a high discrepancy in my leg length, and I had to wear implants in my shoes to correct this. I’ve been on methotrexate since I was three years old and Benapali since I was 11.

I’ve never had a pain free day, but I’ve never let it stop me doing anything and I’ve always tried my hardest to get on with everything as normal.

Lucy: I'm 22 years old. I was diagnosed with JIA at 14, having never had any issues with my joints previously.

I started off with a sore elbow and my GP referred me for some physio. By the time I had that appointment my knees had also flared up and I was sent for blood tests.

By the time I was diagnosed I had flared up in my elbow, jaw, both knees, and one ankle.

My life changed at that point and I found it tough to come to terms with how things were going to be from then on.

How did you meet?

Lucy: While I was shielding during the first lockdown and feeling quite lonely.

I thought about how it might be nice to chat with some other people of a similar age going through the same thing.

I'd been in the Arthur's Place Facebook group for some time and decided to search the name of my hometown to see if anyone else had posted from here.

I found a post that Francesca had put about 6 months prior which Tara had commented on saying that they're both from Norwich!

I wasn't sure if they'd think I was weird for commenting on such an old post, but I'm so glad I did as they added me to a group chat straight away and we've been friends since!

What initial conversations did you have?

Tara: After the initial shock that we had found two other girls around the same age with the same condition and a lot of ‘OMG I can’t believe it’ moments, we talked about our diagnosis and journeys with the condition so far.

We also talked about how it affects our daily lives, the medication we are on and if we all experience the same side effects, as well as our experiences when we go to the hospital.

Why do you think you clicked? What gave you an immediate bond?

Francesca: I think we first bonded over how much we had in common because we all knew what it was like to have the condition and what the pain and medicine we had to be on was like. We felt like we weren’t alone for once.

Lucy: Although we all have different interests and live different lives, I think we bonded so well simply because of our shared experience with arthritis.

We all have the same rheumatologist and have been through the same issues. We can laugh together about it (we call ourselves the 90s grannies), but also share when we're at our lowest. We know that there's a great sense of understanding between us.

What is your friendship like day to day?

Francesca: Our friendship has grown so much over the months we’ve known each other; we’ve become each other’s best friends. We communicate through a group chat and we tried to meet up at least once a week to have a catch up before lockdown.

How is talking to each other different from talking to your family and other friends?

Tara: Being friends with other people who have the condition is amazing. Considering it is an invisible illness, it’s hard for people to fully understand that young people suffer badly and that arthritis affects us daily.

When we are out together, we understand if one of us needs a rest or if one of us feels too tired or too poorly to meet up at all.

Do you have advice for other young people?

Tara: Ask your nurses at the hospital about arthritis support pages and groups! And if you join one, don’t be afraid to share your story and where you are from.

It may lead to you talking to someone in the same boat as you and even better living in the same city and it will change your life for the better!

Lucy: My advice for other young people would be to try and do what I did, find some people who have been through what you've been through.

Your life will be different from other people who don't have arthritis, but that doesn't mean it has to be worse or lonelier.

We’re here for you

If you or a family member under the age of 25 has arthritis, our Young People and Families service is here to support.