This time last year I announced I was going to take writing seriously. I was going to write every day. That did happen for a little while. I did an online course, which I enjoyed but never quite got round to finishing.
Why? I’m easily distracted. I wanted something I felt I could actually have an impact doing. Writing a bit is fun, but it feels like additional to real business.
This year, the real business turned out to be talking, watching, reading and meeting. Learning from others, sharing my experience beyond the hardy bunch of wonderful bloggy buddies. (You have no idea how much I’ve been boosted, buoyed, inspired and entertained by you.)
Soo told me that twitter was full of ‘e-patients’ and that I might be interested in what they’re doing. In the world of rare disease, we know that patients often know more about their health than those treating them, but I’d not got to thinking beyond that. So I had a little explore.
e patient: enabled, empowered, engaged, equipped
Hashtags and twitter chats, an application for a European course to be a patient expert. The latter didn’t work out, but there have been many opportunities this year. I just had to look round me and see them. Our own Marie is a leader in the world of e patients. A real person, a bloggy buddy! It can’t be too alien then, surely? I found conversations, tweet ups, conferences, courses, books. Lots of ways of learning and sharing. And I got to meet Marie.
I had to develop the confidence in the validity of my own experience, my own voice. It’s not just about reading another article. I had to join in. I had to stick my hand up. I had to be brave, and use that voice. Some days I even had to get dressed and leave the house. Grand plans are one thing, anxiety is another…
I’m learning that I can make a difference. Each of us can.
Small steps, and we can make change happen.
Let patients help.