Etiquette and Expectations
Online support groups exist for every malady known. There are hundreds of them for each ailment, some covering the topic generally, and some drilling down to a specific area of interest within the ailment. For chronic facial pain, you can find online support groups for general facial pain, Trigeminal Neuralgia, Geniculate Neuralgia, Glossopharyngeal Neuralgia, Occipital Neuralgia, Anesthesia Dolorosa, Trigeminal Deafferentation Pain. There are groups that focus on rhizotomies, Motor Cortex Stimulation, Gamma Knife surgery, and MVD surgery. Within those subsets, there are more subsets. Parents of patients, children of patients, single parents, caregivers, and spouses. There are geographic groups, natural remedy groups, religious groups, and secular groups. With just a little guidance, you can find your home and get the support and encouragement you need.
Learn the Codes of Conduct
There are standard codes of conduct which apply universally. Rules like don’t swear, don’t insult each other, don’t lie, don’t cheat, don’t steal, and be who you say you are. In addition to the big ones, each community has its own conduct code, written or unwritten. Some support groups are casual communities, with very loose standards of conduct. Others are more formal, with stated standards of conduct and strict enforcement of the rules. The only way to know which type of community you have moved into is to live there for a little while and observe what people are doing around you. You wouldn’t walk up to your neighbors on the street, interrupt their conversation, and start talking loudly to everyone with no idea what they had already been talking about. That would be rude, and you would walk away with no more insight into your community than when you interrupted them. The same applies in the online “universe.” Spend some time after you join a group getting to know the culture. Learn from the posts you read. Look for a pinned post, look for policies or rules. Look to see if they have any files or documents. Educate yourself, and when you have done that, introduce yourself and politely thank the group for letting you join. First impressions are important, in any universe.
No support group, online or not, exists so that people can come in, take what they want, and leave without contributing. If everyone did that, there would be no support because there would be no group. In truth, the amount of work that goes into a successful support group simply cannot be quantified. From the labor of the admin and moderators, to the selfless giving of time and advice by those who have come before you. As the admin of the MVD Patient Support Group on Facebook, I consider the many hours of work I put into it every week to be a very small price to pay for the wisdom and insights I have gained from the members and their collective experience. I don’t know if I contribute the most, but I would wager that I benefit the most. The people you meet in these support groups, the ones whose names you know because they post and comment regularly; the same ones who encourage others and share their experiences, positive and negative, to everyone’s benefit – they are good and caring people. And they stay in the community because they are getting back what they put in, with interest. It naturally follows then that if one doesn’t contribute to the group, one can’t expect to get much out of it. You may not be comfortable posting questions or making comments, and that is perfectly fine. But, as you would in person, do so courteously.
Always remember that an online support is comprised of real people who are no less deserving of courtesy than people sitting around you in an in-person meeting. Anything you wouldn’t do in-person is something you shouldn’t do in an online group. It would be rude to hijack a conversation and turn it to your own interests. The same is true for participation in comment threads, the online version of conversation. Don’t minimize another person’s situation, and don’t seek to one-up people. When the group people turn to for encouragement becomes a misery competition, it has lost its way.
Support Groups: Bottom Line
Look for a place where you are comfortable, welcomed, and uplifted. Contribute and don’t be rude. The truth is, you’ve been through things that no one else has experienced. A good support group gives you have an opportunity to use that knowledge to help others, and when you help to guide another person across terrain you’ve already traveled, you bring some meaning to your suffering.
Essay author Erika Conrad is a veteran of 28 years of chronic facial pain. Erika is the founder and admin of a 1,000+ member online support group for MVD patients.