Online groups and social media are an important part of self-care for many people with Crohn’s and Ulcerative Colitis. The advice and support we get are invaluable, but have you ever wondered about the people who don’t post?
A new study* looks at who posts and who lurks in online IBD groups, using a survey of 249 participants from 35 different groups. About 2/3rds had Crohn’s, about a third had UC, and a few were still waiting for diagnosis. Most of the participants were active posters in these groups.
Of those patients, 13% said they never posted a message — that is, they were lurkers. Lurkers visited the sites less often and spent less time online than those who were active posters. The study found no difference in membership time between lurkers and posters.
The most interesting part of the study is the reasons the lurkers gave for not participating. Some felt they were not informed enough to contribute, and some did not want to put their personal health information on the Internet. Some felt their disease was too mild, and some felt it was too severe:
“My condition has been very serious many times and reads like a horror story[…]. I don’t post about myself as I don’t want to scare people – most people will never experience what I have – why frighten them, Crohn’s is scary enough without knowing about extremes that will only affect a tiny percentage of people, people in these communities need support not fear”
Another reason some lurkers gave is that they had nothing to add to what has already been said, and did not want to repeat information already posted.
The study concludes by pointing out that we should be mindful of these patterns when participating in online groups. The people who post do not represent a true cross-section of patients, and it is probably also true that the estimate of lurkers is low, if lurkers were less likely to take the survey in the first place.
As someone who was diagnosed pre-Internet, let me point out: it was really lonely back then. Since then, online groups have been vital to my fight against IBD; I am really grateful for the help I get and glad to give what help I can.
But after a while, I started to notice that I was not hearing from the sickest patients. In my experience, most posts fall into two categories: people relatively new to the diseases asking questions, and people who had mild-to-moderate cases for five to twenty years. Crohnology membership data seem to reflect this pattern, too.
When I started participating online, I was in the second category. When I got really sick, I spent even more time online, and when I got better — well, here I am.
But talking to friends who are sicker than me, I know they feel empathy fatigue from online support. I feel the same way sometimes; I want to be helpful, but there are questions I no longer have any energy to answer (“Has anyone tried Remicade?”).
Speaking personally, I really appreciate input from the hardcore cases. It helps to know how other people survive things that scare me. And as isolating as IBD can be, it must be worse to feel that you are too sick to talk to other patients.
Let me be clear: I do not think forums and boards should turn into contests over who is the sickest. That happens too often already; most of the ‘drama’ in the online IBD community boils down to arguments about who has it worse. These squabbles are a huge turn off to many people who have been active online for a long time, and another reason more experienced patients might be less likely to participate.
I am saying that we should welcome anyone with IBD, even if their experience is atypical or scary. Everyone benefits from having a fuller understanding of our illness. Obviously, I think Crohnology is a community that wants the hard cases — even needs them, in order to thrive — but we can do a better job of encouraging those patients to participate.
The study’s insight into who posts and does not post is helpful in making sense of online support groups. Let’s be grateful for all the people who do post — especially when their posts help — but also welcome those who feel they are too different to belong to our groups.
*The study is Coulson, Neil (2015). “Patterns of engagement with Inflammatory Bowel Disease online support groups: comparing posters and lurkers”. Gastroenterology Nursing, July 9. A full-text copy was provided by the author.