Steven

Steven
  • Location Edinburgh
  • Type of Arthritis Osteoarthritis
  • Date of Birth 1963
  • Age at Diagnosis 15

When I was about 13 or 14, I started to feel pain in my left big toe. I went to my GP, who then diagnosed arthritis in the joints of my toes. Over the years, it’s spread  elsewhere: both knees, both hips, shoulders and the base of my neck.

I didn't think people that young got arthritis 

I was shocked when I received my diagnosis. I didn’t think that people that young got arthritis. My dad almost dismissed it, as he felt that the diagnosis couldn’t be right – arthritis was assumed to be an older person’s condition. He couldn’t get his head around it.

I was prescribed anti-inflammatories and told to strap up my toe before I did things like play football.  40 years ago, the world was a different place. I was basically told to go away and get on with it.

Some 15 years later, when I experienced knee problems, I had my first MRI, which diagnosed degenerative arthritis.

Finding Arthritis Care

I discovered Arthritis Care via an acquaintance, who met a staff member at a presentation a few years ago. We learned that Arthritis Care was developing a new lifestyle management service. As we were already involved in this line of work, we met with them to talk through some ideas and they offered us some training.

Setting up a group

Arthritis Care provided training in volunteering and support to help set up a new group called ‘Heads Up @ Clermiston’ for  people with various long-term conditions.

Being a volunteer with Arthritis Care has changed my life, as I feel valued. I also feel supported, which is great, as that doesn’t always happen in this day and age. I have also built new friendships.

The best thing is the people

The best thing about being a volunteer with the Heads Up @ Clermiston Group is the people – their camaraderie, the peer support for each other, their patience with each other. There’s never malice or impatience. It’s fantastic the way we all come together and are more than just a group – we are all friends. If the group wasn’t there, some people wouldn’t get out of their homes at all. Without the group, they would be socially isolated.

The difference I think I make to the group as a volunteer is that I’m reliable, I’m patient and they can depend on me. I realise that although I helped to form the group and am a facilitator, it’s important to me that the members know that it’s their group. It’s about them. It’s not about the facilitators.

It makes me feel very humble that there are people living with far more difficult circumstances than I am. It puts everything into perspective for me. I also live with someone who has a disability and because I have arthritis, this can be very challenging.  Having this knowledge and also facilitating the Clermiston group allows me to acknowledge that although arthritis is painful for me, there are other people with disabilities living their lives every day with multiple conditions.

Inspiring others

Arthritis is extremely painful and is debilitating. It’s not easy to manage and I try to live the majority of my life without medication, which is extremely difficult. It’s a horrible trade-off to make. I either have a horrible, painful day, or take painkillers, which means I can’t function and have a ‘lost day’.

I’d like to try to inspire others to volunteer with Arthritis Care. Take the opportunity. Learn from the skills and knowledge that Arthritis Care has. The training is second to none. Take what they give you, then use this elsewhere and try to make a difference to other people’s lives.

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