How do you Forum?
Welcome to 2018 with Girls with Guts! After five successful year in the books, we’re excited to move forward and continue to help connect women of all ages and stages along their IBD and ostomy journeys.
Many of your are probably aware of and participate the Girls with Guts Private Forum on Facebook. Online forums for the chronic illness community are a wonderful way to connect with others from around the world who are facing similar struggles. However, forming a successful online community requires active effort on the part of each of its members. Here are some thoughts on productive and respectful ways to participate in the forum.
Work to create and maintain a safe space. While our rebellious guts create an instant bond between us, a group this large (over 3,000!) represents a diverse community of women. First and foremost, be tolerant regarding the beliefs of others, whether they be about diet, meds, or alternative therapies. Be mindful that disease looks different on all of us- some of us lose weight, some of us gain. Some will swear by salads while others avoid fiber like the plague. Religion might play a strong role is helping some women cope, while others have decided it's not for them. Either way, be mindful that we're all doing the best we can, each in our own way. Attacking each other is not only rude, but it undermines the entire purpose of the organization. Building a life and living each day in in the face of chronic illness is hard enough, so make sure that you're always contributing in a manner that continues to build a supportive environment.
Stay on topic. If you’re starting a post with with “not really related, but…”, you probably already know that this forum probably isn’t the most appropriate place for that particular question or comment. While it's great to have a private group where you can share something that you don't want to post publicly on your own page, keeping your questions and comments gut-related keeps the forum focused and effective. A great way to feel more supported in all aspects of your life is to make individual connections with other ladies in the group. I myself have four ladies that I text with on a regular basis to complain about the weather, laugh over that dumb thing I inevitably did again, or share the thrill of comfy new underwear. Since they know me and my story, so they're great to bounce ideas off of when I'm trying to figure out why I'm randomly having chest pain or what food might have made my ostomy output alarmingly green. Take the opportunity as part of the GWG community to find your people within it!
Be conscious of who you’re engaging with. Many patients who live with a chronic illness acquire an arsenal of knowledge related to their condition. Hearing others’ personal experiences can be a great way to help you develop some new coping mechanisms or gain insight regarding an important upcoming decision. At the same time, we don’t know all there is to know about your specific circumstances and medical history. Protect yourself by remembering that your body and your disease is never going to be exactly the same as another members'. When it comes to making major decisions regarding your treatment plan, make sure that your medical team is always integrally involved. On the flip side, if you're offering advice or sharing part your story, keep a similar mindset. Don't invalidate another's symptoms because they don't line up with yours. And while it's tempting to always keep things rosy, be honest (gently). There are days when someone might need to know that you, too, ended up on the wrong end of a fart gamble and really aren't a fan of your j-pouch over the last few months.
Don’t forget about the search feature. Are you starting on a new med? Contemplating j-pouch surgery? Looking for tips for using convex ostomy wafers? Facebook has a feature that allows you to search specifically within the forum and read through previous threads on your topic of choice. This helps you by letting you see a whole bunch of responses instantly, and helps the group to not be overwhelmed by repeated questions. Our members have already put a wealth of information out there, and we want you to use it!
As always, ladies, thanks for reading, and thanks for contributing! Girls with Guts couldn't be what it is without you. Here's to another year together!