This program appealed to me greatly. When I was first diagnosed with RA (rheumatoid arthritis) I would have appreciated meeting someone who could give me tips and a viewpoint about RA based on life experience. What I wished for was a friend who could help me.
Upon diagnosis I knew very little and had no support. My doctor at the time was a good source of information but interactions with him were limited. It was lucky for me that I was admitted to hospital when I was diagnosed to start aggressive therapy. There I met a support team of professionals. Since this was before easy access to the internet they and my doctor were the only help I had.
After 10 years with RA I finally began educating myself about my health problems and the health system. When I volunteered to join the Peer Mentor program one prerequisite for participation was taking the Arthritis Self Management Program through The Arthritis Society. Though it seemed like a formality at first I learned from the program and from the other patients.
Of course for a research study the knowledge level among the mentors had to be consistent so all participants were in for some serious training. When the training started I was presented with a five pound binder full of resources and information and participated in amazingly good instruction with the other mentors and the research team.
The program was terrific for me. I gained a lot of confidence in my ability to help someone with Early Inflammatory Arthritis without being too overwhelmed. Another great piece of learning was to stop and listen more. If you talk too much you never hear anything. In fact what I learned about goal setting was a big help to me in my working life as well.
The other mentors who I met in the program had such a diversity of strengths. Everyone contributed to the learning process.
Here is a brief overview from The Arthritis Society site:
http://www.arthritis.ca/research/summary/PeertoPeer Peer to Peer Mentoring for Individuals with Early Inflammatory Arthritis (EIA)
And here are the papers published by Dr. Mary Bell and the team:
http://www.pec-journal.com/article/S0738-3991(13)00053-0/abstract
The experience and impact of chronic disease peer support interventions: A qualitative synthesis
Peer To Peer Mentoring: Facilitating Individuals with Early Inflammatory Arthritisto Manage Their Arthritis – Exploring Learning and Support Needs
Peer-to-peer mentoring for individuals with EIA: feasibility pilot
peer to peer mentoring is a wonderful way to help people get through especially the early days of RA. I'm glad you're part of it and that you learn so much yourself.
ReplyDeleteOne thing, though… I think there's a certain irony in having a 5 pound binder in a course for people who have RA. Doesn't it seem a little hefty for people who have aching joints? ;)
That's what I said too Lene. If I had known I would have taken my wheelie bag with me. But we did not have to bring it with us often.
ReplyDeleteThe weight is partly because we also received all of The Arthritis Society booklets and brochures, and they provide a lot of info.
All of the reporting and evaluation was online.
What a great programme to be part of! Glad you can help others starting this journey. As for the 5 pound binder, that made me laugh :) Good luck with your mentoring!
ReplyDeleteI think it's marvellous doing this, Annette. Good for you. I would love to do peer support, but I would only be able to do it from home - I live in a small town. There is always something to learn when we learn to teach, that's been my experience as you've found!
ReplyDeleteI'm glad there is an Internet, as I would have been very lost at my diagnosis with Sjogren's in 2002!
There are drawbacks to living in a big city but a plus is that you can find more real life opportunities to volunteer. This evening there was a nice dinner and get together for one of the programs and it was so enjoyable to talk to a group of like minded people.
ReplyDeleteI got my sjogren's diagnosis on the internet also
When I was diagnosed with breast cancer at a young age I felt very isolated and alone. All the women who were in my support group were much older than me and while I could relate to the symptoms and side-effects they were experiencing, I longed to have someone to talk to who understood the unique psycho-social aspects of a disease which isolated me from my healthy peers. I turned online for that support and it's been an important part of my recovery.
ReplyDeleteThanks for commenting Marie. I'm glad that you are recovered.
ReplyDeleteWhen I was diagnosed I felt isolated and alone for years, like you did. The only support group was the Bluebird club made up of older women. Once I started using a computer one of the first things I did was look for groups of people like me.
Finding them made such a big difference. I wish that there had been a peer mentoring then. The support I had online was strong and helpful. Though I still have not met anyone from the original support group we would love to get together.