6 Ways to Find Your Online Community of Support
Are you a newly diagnosed patient or a caregiver wondering where to find your own online community? Here are six practical ways to get started.
(1) Find People to Follow on Twitter
Start by following the Twitter accounts of organizations and groups related to your interest. Go to their website and click on the Twitter follow button if they have one. Once you start following individuals and organizations, Twitter will automatically populate your account with suggestions of similar accounts to follow.
(2) Build Twitter Lists
Twitter can be a little overwhelming to new users. To help you keep track of conversations, it’s helpful to organize your followers into lists; e.g. “organizations”, “researchers”, “patient advocates”, “hospitals”. You can create your own lists or subscribe to lists created by others.
Further Reading: How To Create Twitter Lists
(3) Follow Relevant Conversations
The easiest way to find conversations of interest is to click the native “Search” facility at the top of your Twitter screen and enter your keyword or hashtag, for example #cancer. Hashtags are a useful way to search for health related conversations. Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”
Further Reading:12 Ways To Search For Health-Related Content On Twitter
(4) Join Twitter Chats
A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #BCSM held every Monday at The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.
Further Reading: How Does A Health Care Twitter Chat Work?
(5) Join Facebook Groups
Many organizations have a Facebook presence and by following their pages you can keep informed of their activities and find other patients to connect with. When you’ve identified some groups which interest you, don’t feel you have to join in straight away. Take a little time to learn if the group is the right fit for you. Does it appear to be a welcoming and safe space? Are the discussions and norms of the group respectful and in line with your interests and values?
(6) Join The Blogging Community
Writing for Journeying Beyond Breast Cancer and linking into a community of liked-minded bloggers has been the single most empowering thing that I have done in my journey with cancer. It has enriched my experience, brought new friendships into my life and expanded my horizons like nothing else.
Cancer can be a frightening and lonely experience. Being able to write about it honestly and unsparingly and connect with others is a powerful release mechanism. Sometimes the very act of writing our story and having it heard and acknowledged can go a long way towards healing our wounded selves; to quote Riva Greenberg: “we heal a bit every time we are heard, seen and cared for”. Blogging in a community we bear witness to our own life and to others; we find strength and solace for the journey.
Further Reading: Check out the weekly round-up of blogs which I curate each Sunday.
How about you? How has finding your online community helped you? What advice would you offer someone who is newly diagnosed on the best places to go online for support.