Have you just recently been diagnosed with a condition you know little about?
Are you a carer?
Would you like to access information and support from fellow patients, carers and healthcare professionals over the internet and social media?
You will need to be careful to access the correct information, to follow the right people and to avoid the well-documented risks associated with being online.
There is plenty of information and support from people just like you, who have been through this already and who are willing to share their experiences and listen to yours.
You don’t have to be visible on social media – if you prefer you can listen in to the online conversations between other patients. They don’t mind, otherwise they wouldn’t be speaking out online. They know, and hope, that people like you are listening to their experiences and realising that you are not alone. In my opinion, Twitter is the best forum for accessing support while remaining anonymous yourself, if that’s what you’d prefer.
You may hear a lot about the negative aspects of social media, particularly Twitter, in the news. However, what is never reported in the news is the wealth of support that is available there.
Here are my 8 top reasons to encourage patients to use Twitter:
1) It’s free and easily accessible.
2) You don’t have to leave your desk/chair/bed/hospital bed to use it. You also don’t need to organise childcare or respite care for your loved one.
3) Twitter transcends most barriers. If you have difficulties with crowds, have impaired vision or a disability, live far away from support group venues, or just don’t want people to see you going into a local group meeting, you can still access the kind and compassionate peer support that you need.
4) Even if you are fortunate enough to be able to access face-to-face support at actual meetings, Twitter provides an opportunity to expand that network and connect with your peers around the world – people who you might otherwise never meet.
5) Twitter also offers an opportunity to ‘listen’ in to online conversations between healthcare professionals and to learn from them through links provided by them to articles or research about the latest evidence, new ideas or best practice in the clinical area that is relevant to you.
6) Time zones are irrelevant on Twitter! The community that is available online is not confined to your own town, county or country. No matter what time of the day or night you feel a need to connect with someone who truly understands what you are going through, there will be someone listening. I have watched in amazement and delight when I see the almost instant and numerous responses when anyone Tweets that they are in distress.
7) Office hours also mean nothing on Twitter. Emotional distress is not confined to the limited hours of most health services, so why shouldn’t people be able to access a friendly empathetic ear at 2am or 4am, or whenever they become overwhelmed or have a sudden worry or intrusive thought?
8) In my opinion, Twitter offers people the opportunity to demonstrate their compassion even more than they can in real life. Supportive tweets from others are always gentle and even affectionate, perhaps because the barrier of physical personal space is just not an issue online. Social etiquette means that we are unlikely to hug a stranger even if they are obviously in distress (we worry that we’ll be perceived as creepy!), yet supportive tweets regularly include *hugs* and *xx* and smiley faces to convey warmth. Who among us doesn’t need a virtual affectionate hug sometimes – let alone anyone facing a health challenge.
I would really like to help patients and carers to take advantage of all these benefits. With this in mind, I have created a new service where patients can book an hour of online training on the use of Twitter so that they can become familiar with it and build their own personal community of online support. If you would like more information on this service, pop over to this page and do please Tweet or e-mail me if you have any queries or suggestions. My virtual door is always open.
As always, I wish you the very best of health and quality of life,