When I was first diagnosed with IC, I was 13 years old and it was the early 1990s. The internet wasn’t really around. My symptoms slowly subsided over the next few years then came back full-force when I was 23. By then, it was 2002 and the internet was everywhere. Online support groups were now a thing. I first discovered the IC Network Support Forum and felt such kinship with the other patients there. I learned that I wasn’t alone. I found all sorts of good ideas for self-help and, most of all, I was able to talk with people who really understood what living with IC is actually like.
As social media began more and more prevalent, more patient support groups started popping up. Some are awesome. Some are drama filled. Still others exist to help support their administrator’s businesses. Many have a very specific platform. And all of that is OK, but it can lead to some confusion for new IC patients. You have to learn how to find a good online support group and become a good member of it.
First, you need to start with finding the right group for you. Do you research before joining the group. If it has posts that are available publicly, read through them. See what kind of things are being discussed, note how the members talk to one another and pay attention to the timeline. Are there daily posts? Has it been months since a new post went up? Seek out information on who the administrators/moderators are. Are they fellow patients? Are they trying to sell a product? Look for a post about rules of conduct and the consequences of breaking the rules. If the group isn’t a public group, read what you can about it ahead of time. Join it and then do your research. If you find it isn’t a good fit for you, then you can leave the group.
Once you’ve found a group or two that you are comfortable in, it’s time to become a good group member.
- Respect the privacy of group members.
Nobody wants their business spread around. Don’t talk about your fellow group members to others outside of the group or even post on their personal social media pages about discussions within the group. Patients want a safe place to vent and talk. An online support group should be that place.
- Be a good person.
This should go without saying, but don’t steal, lie, swear, insult others or pretend to be someone you aren’t. You can totally disagree with someone without insulting or attacking them. At the same time, also be wary of posts offering products or things that seem too good to be true. While most group members are legitimately fellow patients looking to connect, sometimes a bad seed can get in.
- Don’t be a lurker.
You don’t have to post every day or comment on every single post, but you do want to be in groups where you can jump in and chat as well, not just lurk around reading information.
- Know when to keep scrolling.
You’re not going to agree with everyone all the time. Sometimes you can respectfully disagree. Other times, you need to just keep scrolling. Assess whether sharing your different opinion might be helpful. If it wouldn’t, just keep scrolling and don’t comment.
- Avoid competition.
In chronic pain groups, sometimes competitions can inadvertently start of who has it worse. You really may have worse symptoms than someone else, but that doesn’t make their symptoms or struggle any less real or any less valid. Don’t be the person who says, “Your IC must not be as bad as mine if you eat pizza with tomato sauce” and other such comments. Respect that your fellow patients are all struggling whether their symptoms seem less than yours or not.
- Remember you’re dealing with real people.
It can be easy to forget sometimes when we are online that we are dealing with real people on the other end of our comments. If you wouldn’t say something to someone in person, don’t type it to them online. And even utilize the lessened immediacy online by stopping to think (maybe even take an hour or a day!) before you reply.
- Give some grace.
Everyone in an online support group is dealing with pain. They are most likely exhausted. Many may be on pain medication. The chances that they type something wrong or that isn’t what they meant sometimes are pretty darn good. It’s not as easy to read an intent in an online post as it is when you are face-to-face. Sometimes you need to just give group members some grace or benefit of the doubt. Ask for clarification if need be to make sure you understand where they’re coming form.
- Know that it’s not as bad as it may seem.
One thing I’ve found to be true in all of the online groups I’ve dealt with is that when patients are feeling well, they aren’t posting as often. Be careful to not get discouraged at how bad everything is. Remember you are seeing most posts from people who are in the midst of flares rather than those who are having good days and enjoying life at the moment.
- Be smart about what you share.
While an online support group should be a place to open up and share safely, know that it is still an online group and thus can pose some risks. Don’t share your address openly or post other sensitive information. Make sure you are in a group you can really trust before you share anything personal.
- Move on if it’s not a good fit.
Sometimes a group might be a good fit for a while, even a few years, but then it changes and no longer is a good fit any more. Don’t be afraid to move on and let it go. If a group is causing you more stress than it is helping you, it’s time to walk away.
- Be a good listener.
Do your best to not offer advice unless someone is asking for it. So many times people just need to vent or get out their feelings. More than anything they may need a sympathetic response without a slew of advice alongside it. Respond in a way that you want others to respond to you.
- Do your own research.
While patient groups can be a great place to discuss treatment options and what’s working for some patients, they are not sources of medical information. Do your own research and talk to your doctor before trying anything. Don’t rely on your group members for medical advice. Each patient is different, and that’s especially true with IC. None of us are just alike in symptoms or effective treatments.
- Do your own research.
Keep your group in perspective. Remember that every support group wherever you find it is always going to be biased towards patients who are struggling. Why? Because that’s their purpose. To help! But what about those patients who are doing better? They don’t come as often. You might get the misperception that every patient is struggling and that simply is not true. For every patient in your group having a bad day, there are far more having very good days.
- Don’t limit your IC outreach to one group
Every group has biases either from the group leaders or the participants. As a result, you might get a skewed perception of something related to IC whether it diet, the role of antibiotics, other therapies or pain care. Don’t rely on a support group for your basic IC education nor should any patient on-line give you medical advice. Their experience is not yours and vice versa. They may have a completely different subtype than you do. Take the time to build your knowledge about IC first by reading the IC Network website.
- How much time is too much time?
It is not healthy to spend hours, days or even weeks obsessively reading on-line support groups and, especially, Facebook. Why? They can trigger anxiety and distress. It’s very important that you focus on real friends, people in your daily life who can help and support you. Don’t limit your socializing to the web. Please open the drapes, leave your room, get outside and talk with your neighbors, your families and friends. On-line support groups cannot fill our most important and basic needs. Keep it in perspective.