When I grew up in the 1980’s, I was the only one with Crohn’s far and wide. It was not a very common disease for children (or it was not diagnosed very often, who knows?). The internet wasn’t around yet. The German DCCV e.V was around, but at the time only through print publication, and again, mostly for grown-ups. And while I did indeed feel lonely at times, I can see the good in this too- I was simply forced to communicate what was going on to others who do not have IBD. I can’t say that I was always 100% successful in communicating my needs and wants, but that is not something IBD specific. Communication is always messy.
When online IBD communities popped up at first, I was in a long stretch of recovery. I didn’t think I’d need it at the time (oh, the hubris). When shit hit the fan in 2015, I began to regularly visit facebook groups, forums and blogs more frequently, and in May 2015, I went to my first ever physical IBD group. These days I don’t go very often, but I appreciate that they also have an online forum. Almost three years post surgery, I am amazed by how diversified these groups have become, from online groups just for women to diet groups etc. At any point in time, you can post, and there will always be someone to get back to you. Yet, I am also torn about them.
Here’s what’s great:
- Camaraderie: It’s comforting to be able to talk to someone who actually has an idea of what you’re going through. Moreover, since it is online, at any point in time, you can post, and there will always be someone to get back to you.
- Life-hacks: Your doctors are there for your meds, your labs etc. Yet, there are a lot of daily life occurrences that need to be navigated with IBD, from how to talk to partners and friends, dating, what to eat during a flare, ostomy accessories, picc line covers, comfortable underwear, etc.
- You get an idea of the many sides of IBD: Your very own experience of IBD can sometimes make you a bit myopic. I am speaking from experience here of course, learning how the disease affects others has greatly helped me to frame how I see and process what is happening to me and my body.
- Having a group outside your circle to vent to. IBD (or really all chronic conditions) affect the entire family and your circle of friends. So when conflicts arise, it may be good to have someone to talk to.
Yet, there are downsides to online groups. Those downsides are not big enough to completely swear off these groups, but at the same time, it’s important to be aware of them.
Here are what I perceive as problematic:
- Depending on group size, online groups can become cliquish and drama prone. I have observed this in a few groups, and it can be hard for a new member to be heard or participate in a conversation. Some groups have wonderful admins, who try very hard to make people feel welcome and enforce etiquette, others don’t.
- Oversharing members– this is obviously something that people perceive on a personal level, as some people are more private than others. I really don’t need the salty deets of your sex-life, I really don’t. I usually err on the side of private, but again, this is a personal decision, so when you enter online group space, just be forewarned.
- People misreading what a poster is asking for. This is something I notice most often when people post about a partner/family member/friend not being understanding or even downright abusive. The last thing this person needs to hear is about how your husband makes you always feel good about yourself, and how everyone in your family is understanding. They know that their situation is not ideal, otherwise they wouldn’t post! They came to kvetch, vent and support.
- A lot of wrong information is being given out. I get where it comes from- there is no cure for IBD and it sucks, especially when the meds you’ve been given are not helping. The medical community often lacks the compassion or even understanding. Still, going on some random diet or taking a supplement won’t help. Anecdotal experience is not a substitute for peer review. When you comment under posts like these, be prepared to be accused of anything from not being open-minded to being a pharma-shill. Some admins are really good about monitoring these conversations, others less. If you’re in doubt- here is a good article about vetting sources
To me, the good outweigh the bad for certain. As I said earlier, communication is always messy. So enter at your own risk!