SIBO can be a very isolating illness. Suddenly you can’t go out to eat with your friends since you are sensitive to everything. You can’t really go out to a bar with your friends either, drinking is not recommended. Often you just don’t feel like even leaving the couch when your gut is churning and you aren’t sure when you’ll next need to run to the bathroom. Friends and family rarely can understand what is going on since until you experience SIBO you really don’t get it. All of that can leave you feeling alone and a bit depressed, I know it did me. I think the only person I saw outside of my immediate family for months was a string of doctors as I was trying to figure out what exactly was wrong and what to do about it.
The online support groups can be helpful but can also be a bit overwhelming and confusing since there are so many opinions and so much repetition. They are a good place to learn more about SIBO and get some questions answered but still it is with people you don’t really know and can’t call on for support when you really need it.
All that led me to wanting to start a local support group. A year ago I put out feelers on the SIBO Support and Discussion Group for a local meet up and got a few people interested. A few weeks later we had our first meeting at a local library, it was me and one other person, Shari, who was the other local SIBO blogger in the area who has since become a good friend. From that small start I created a private Western Washington SIBO Support Group Facebook page for the group and slowly began adding members. In a year we have grown from the original 2 members to 60 members and at our monthly meetings we have a usual group of 6-8 that show up plus one or two new people who will show up once or twice just to get some questions answered.
The group has been a great way to share our struggles and our successes with each other and build local support so it is easier to get doctor referrals, find resources locally or even get supplements from someone if you run out and are still waiting on an order to appear. If people are struggling they can contact a real person they know and get some support on the phone or in person. We have had supplement exchanges, a BBQ potluck and even a holiday party on top of our usual monthly meetings. The best thing for me from all this is the friends I’ve made through the group, friendships that will continue even when SIBO is a thing of the past for all involved.
Right now there appear to be only 4 support groups going in the US. Along with our Seattle group there are:
Given the number of people with SIBO there could be so many more support groups around the country and the world. It was very easy to get going too, find a local meeting space at a library or coffee shop that has rooms and make a post on the bigger SIBO Discussion/Support Group and people will come. Our basic format depends on who shows up. If there are new people we will get their SIBO stories and everyone will introduce themselves and give their brief story. The Q&A begins often letting the new people ask questions of the others. If there are no new people and it is the regulars we do a check-in with everyone telling what is up with their treatment or what is up with them then it turns into a general Q&A session with people asking about something and anyone in the group trying to answer. We hold meetings for 2 hours, sometimes we wish we had more time, other times it seems just about right.
So, it is easy. Go start a support group in your area or join one if you happen to live in a city that has one. You will find people in your area and the group will grow and be rewarding for everyone.