Our passions are raised, when we are talking about football, music, cars, women, men, politics or religion, with like minded people.We can really bare our souls to them, because we know that they really understand and share our emotions.I know when talking on some of the previously mentioned subjects, I can talk for ever, with passion, if I know that we are sharing common ground.
What about when we have been ill? Sharing experiences is somehow very therapeutic. I don't know why that is! It doesn't make anyone feel better physically. It doesn't change your prognosis, yet communicating with someone who has similar experiences to you makes you feel a bit better about things.I know it does, I have the proof! It certainly works for me, and I know from my blogging and personal work which I am involved with, it works for others.
The reason, I have concluded, is that people truly understand the issues, you face, as they share them. You don't have to waste time explaining things, as they understand immediately. They are not just being polite, and they also are truly grateful to be able to share their problems, with a 'brother in arms.'
So how does the 'cancer thing' work then? Most of us are lucky enough to have family and friends around for support when we need it.We are certainly very grateful for that. We have nurses, doctors etc for when we are unwell, and even counsellors if things get very tough.But unless they have similar experience, how can they understand.Put simply, it would be like me talking to a pregnant lady about the issues surrounding childbirth. I could certainly have sympathy with everything involved, but I couldn't pretend to understand what she was going through.
Since my illness I have spent a lot of time establishing the most effective means of communication, in the 'cancer world' When I started my quest, I firmly believed that there was no substitute for 'eye to eye' contact.But I realised that it was difficult to reach many people with that method. Then I started using social media, and the world became my oyster. Now people are communicating with each other around the world, sharing experiences and knowledge.
In the last few weeks I have been able to communicate with many wonderful people, all comfortable with sharing their unique experiences with me, and me with them.None of this would be possible with out social media being the 'conduit' that we needed.But the key to the 'comfortable' communication is our 'common bond' Patients are linking with doctors and support services, almost organically.
All this has made me think, about our large health institutions, particularly the N.H.S. They do what they do, really well on the whole, but I am trying to imagine if I went to them and said
"I have a good idea. I think we should let everyone communicate with each other and start forming their own support groups. We can do this across the world, and anyone can join in!"
Can you imagine what the answer would be? It would certainly include Health and Safety, Risk Assessment, and confidentiality issues. If we were lucky we would just about have formed a focus group to look into it!
In all seriousness I really do understand all the issues involved in social media and health care, but from what I have experienced in the last few years, is that the patient has many more alternative areas of support now, and is creating some answers themselves.I also appreciate that it cannot replace personal contact, but is a fantastic way to share experiences, both near and far. If you are lucky enough, you will get to meet, in 'real life' to enhance your 'virtual' relationship.
I consider myself very privileged to be a part of a growing online cancer community. We know it's not perfect, but it is a whole lot better than it was. It means that we can communicate with people that really do understand!
Chris,
ReplyDeleteI concur, again! My own journey, being diagnosed with a rare cancer, Cystosarcoma Phyllodes, meant that there was very little information and the 'usual' support networks knew less about it than I did! Through the internet, I sought out others who were diagnosed and we now have a support group in Facebook (shortly to be on the www) that has over 430 members from around the world sharing experiences, holding hands and supporting one another.
I am also a Mentor Angel with an organisation Imerman Angels. Set up by Jonny Imerman when he felt that peer to peer support played an important part. They aim to match newly diagnosed individuals with 'Mentor Angels' with the same diagnosis. My role as an Angel is to support, to listen, to share, to signpost and to guide. We chat via Skype, in person, by email and over the phone. I have been talking to Jonny about increasing the presence in Europe (they're based in Chicago, USA). Have a look at their work - http://www.imermanangels.org/ I've also spoken to a number of charities and NHS organisations about Imerman Angels and one London hospital is discussing it with their nurses about a point of referral.
BTW You're fabulous... thank you xxx
Hi Anna
ReplyDeleteYour own personal experience, is a perfect example of what I am talking about.Your group would never have been born if you were waiting for the system to help you. Sure it isn't the same as face to face support, but a lot better than nothing at all! In fact my experience, is telling me that people are enjoying this type of 'remote'support, as they can be as active or passive as they like, and remain anonymous if they so wish.
I love the work that Imerman Angels does, as they try and match up, as close as they can, disease, treatment, sex, age etc. You should be very proud of that work, as I know you are.Well done to Jonny and his team. Yet another example of support expanding through social media. Good luck with that work.
As always Anna, many thanks for taking the time to comment, and I'm really pleased you are enjoying the blog. Many thanks for sharing, Chris