“Seeing him struggle has been heart-breaking as a mum”: Anita and Eli’s story

29 March 2019
Anita and Eli with the rest of the family at an airport.

Eli is 16 years old and was diagnosed with psoriatic arthritis when he was just eight years old. The condition affects various parts of his body, including his hips and knees.

We spoke to Eli’s mum Anita about raising a child with a long-term condition, how she and Eli have used our Young People and Families service and what advice she’d give to other parents in a similar situation.

Everyday tasks are difficult

Eli has psoriatic arthritis and was diagnosed about eight years ago.

His condition has made everyday tasks very difficult for him at times. He has found taking part in sport a challenge and can sometimes feel pain and exhaustion after small activities.

Seeing him struggle has been heart-breaking as a mum, and as a family we have had to modify our lives to fit in with his needs.

The importance of finding the right support

We’re very close as a family, so have supported Eli every step of the way. But we’ve also turned to others for support when we needed it.

We first discovered the Versus Arthritis Young People and Families service about four years ago. We met one of the workers, Steph, at the Evelina Hospital while we were waiting for an appointment. She was so friendly and helpful.

The information she gave us about the service seemed to offer support and advice relating to a young person with arthritis. For us and Eli at that time it was just what we needed. Eli was so excited about the activities available and also meeting other young people with similar conditions.

Eli has enjoyed many residential weekends and we have both attended various family events. He’s also used the young person’s forum.

Using our Young People and Families service

We have found the Young People and Families service very supportive - the events have given us the opportunity to express ourselves and to feel we are understood. Everyone involved in the service have been amazing and we always feel we have someone we can talk to and we can easily access the service for relevant information.

The service has made such a difference to our lives, Eli has benefitted in so many ways. He feels as we do that the events give us the chance to meet other families dealing with similar issues as ourselves. Meeting other families provides support and an understanding that we would otherwise not have. The events are fun but also a platform to talk about any worries or fears we may have.

Anita’s advice to other parents and children

I would strongly recommend a young person with arthritis and their family to contact or take part in the Young People and Families service. It has made life with the condition much easier to live with and has turned many negative feelings into positive ones. All at the service and what it provides is simply invaluable to our lives and we feel lucky to be a part of it.

Are you a young person with arthritis? Or does your child have arthritis? We’re here.

Our Young People and Families services in England, Scotland, Wales and Northern Ireland offer a schedule of events for young people between 10-25 with arthritis. The specific age range and events available varies across the nations, generally they include:

  • Residential activity weekends where young people can engage in activities from archery to zip-wiring
  • Workshops covering topics such as self-management, education/careers, communication, relationships and, in Scotland also include sexual health and art workshops
  • Family events where the whole family are invited to participate.

You can find out more about what’s going on in your area or contact your local Young People and Families service: