When it comes to online support, are IBD facebook groups the answer?
When I wrote this, it was World IBD day, so I'm thinking about all the support I've gained online over the years. I am so thankful for the friendships I've made with fellow patients through Facebook groups, Instagram, and of course writing for inflammatoryboweldisease.net.
However, I'm also going to be honest. When I was first diagnosed, I joined lots of IBD Facebook groups, and, on reflection, I wonder if that is the answer. Today I thought I'd discuss the benefits and downsides of joining an IBD Facebook group...
They certainly offer an amazing community full of people who know exactly how you feel. It's no wonder friendships are made on these groups, and I even know people who have met their partners in IBD Facebook groups too!
The instantaneous nature of these groups means you can have a question answered in minutes. Of course, medical questions should be left to your doctors but sometimes nobody can help you more than an IBD sufferer who has been there and done that...
The downside of IBD Facebook Groups
In that case, what's the downside? Well, first of all, they can offer a skewed picture of life with IBD. I remember when I was diagnosed with IBD, I spent hours and hours on IBD Facebook groups.
But I can remember my mum reminding me that there are thousands of people with IBD that are not on those groups. Chances are if you posted a question such as 'Anyone had side effects from x medication?' you will find lots of people sharing their side effects.
And whilst this is really important, there are also thousands of people taking that medication each day with their illness under control that they're not even thinking about logging on to a Facebook group to share that actually, it works really well for them and they do not get side effects.
It's really like anything-when our IBD is active, it's on our mind more and we may spend more time in Facebook groups seeking support. When it's not, we may just go about our daily lives and not give it a second thought.
So it's important to know, especially when people are first diagnosed, that Facebook groups are only part of the picture.
The second downside for me is sadly the sense of one-upmanship that accompanies these groups. Sadly, for some, IBD can become a competition. If you're unwell, you can bet someone feels worse.
If you feel great on medication, you can bet someone will come along and tell you it ruined their life. If you say gluten-free helped, you'll find someone who says your illness must be mild because it doesn't work for them. I once posted about my job and somebody replied saying my IBD must not be bad because most people can't work.
Differences of opinion on social media
And, of course, there are Facebook group politics that come with any Facebook group. Differences of opinion can cause argument after argument in these groups and it sometimes erodes the support we look for in the first place.
After becoming a mom, I learned these politics weren't specific to IBD either-the the competitiveness, one-upmanship, and firey tempers existed in mom Facebook groups too!
So do I use Facebook groups? Yes, I do. But I am mindful that they only tell us part of the story and I limit how many I use. I'd love to hear your experiences of this below too...
What is your comfort level disclosing your IBD to your employer?