When you suffer from chronic pain, it can be difficult to find people who really understand what you are going through, and who can offer you support and advice. Groups like the Fibromyalgia Association offer invaluable benefits, for which there is no substitute. But in recent years, many thousands have also found help through the internet – and specifically, through what is known as “social media”, that is, sites like Facebook and Twitter that help you connect to others.
Facebook is a social networking site, with more than 600 million active users. Anyone can sign up, creating their own profile, and then connecting to and exchanging messages with their friends and acquaintances. But you can also use it to learn about your medical condition, share information with your friends, and keep them updated about your situation.
Once you have an account, you can set up a page (or “group”) about your condition, which you can invite all your friends to join. They can see any messages you post, and can leave messages of their own. You could use it, for example, to post links to articles about your illness, so that they can better understand what you are going through, or to alert friends to relevant events or fundraisers. If you were going through a really hard time, they could post messages of support, or use the page to coordinate visits or help.
If you are looking for a wider circle of support, you can allow anyone to join your group, not just friends. This would allow fellow sufferers to get in touch, to exchange tips, information and encouragement, and to have discussions. Before Facebook, this could only be done by setting up a forum, which meant hiring a programmer – a costly and time-consuming process. Now anyone with a computer can set up a discussion page, in minutes, and for free.
And don’t forget that there are already many existing groups for people with chronic pain, some run by official organisations and others by individuals. The friends and information you are looking for might already exist!
Another useful site is twitter.com. This social networking site allows you to send short messages – up to 140 characters long – to people who sign up to receive them – your “followers”. Again, you could use it to connect to people in a similar medical situation.
You can start by sending out links to any articles relevant to your condition, or mentioning that you are a sufferer. Before long, people with similar interests will decide to follow your “tweets”, and hopefully, start conversations with you online.
How do they find you? You can search Twitter for all mentions of a certain word. Say, for example, that you are interested in fibromyalgia. A quick search will show who has discussed this recently – instantly showing you thousands of people with a common interest. Once you are in contact, support is not far behind.
Say, for example, that you mention on Twitter that your pain has stopped you from being able to work. Inevitably, one of your followers – probably a fellow sufferer — will reply with advice on how to manage the pain. Perhaps someone else will have some practical advice about how to manage your work situation. Other followers, who are perhaps not in pain themselves but who might simply be interested in learning about your experience, might offer words of support and encouragement. As a result of this online interaction, you could end up receiving helpful advice, and also making friends you would never otherwise have met. You might also offer others the benefit of your own experience – an empowering feeling in itself.
Two other online tools can be enormously useful. On YouTube, you can post videos which you can share with your group. These might be footage from events or fundraisers, or perhaps just a video of yourself documenting or discussing your situation. The videos can be taken with a video camera, or a mobile phone and uploaded; or recorded directly to YouTube with a webcam. Similarly, you can use Flickr to share photos of events and activities (this can also be done on your Facebook group).
Please note, however, that if you have an ongoing legal case regarding your fybromyalgia, you must be extremely careful about any video, pictures and
information about your activities; this could be harmful to your case.
You do not have to be a technological maven for any of this; a few minutes on the computer with a good guide can open up a whole new world. Social media enables you to stay in touch with like minded people and also to meet people you might have otherwise never met. What are you waiting for?
Article by Danny Bermant and Brian Barr
Danny Bermant is director of Brainstorm Design, an internet agency that helps businesses and charities to promote themselves online, including through social media.
Brian Barr is a solicitor with over 30 years experience. He and his firm specialise in representing Fibromyalgia and other chronic pain sufferers. He and the firm have successfully settled many cases with compensation ranging from several thousand pounds up to over £1,000,000.