I’ve spent a lot of time this year posting in various online venues, particularly the Sjogren’s World forums. A lot of people have been asking questions that I myself asked years ago, and I enjoy helping where I can. It also provides a community of people who understand the trials of chronic illnesses.
However, events over the past months have made me realize that I need to take a break from the forums. I’ve been putting a bit of time and energy into posting and replying, and it has become clear that I am receiving a bit of negativity and stress in return. The user that I mentioned earlier continues to post toxic messages targeting me and others, and the mods do not seem willing to take any action. I’ve also noticed a divide between those of us looking for answers, and those who are skeptical to the point of hostility. When another user posted about his success with a treatment protocol, many of the forum members attacked him as a fraud.
I should point out that there are many helpful posters and good information, so I am not advising anyone else to leave. I don’t want this post to be interpreted as an attack on that community. However, I’ve decided that my stress level will be lower if I avoid its more toxic elements, at least for a time. As a SS patient, it’s important to identify elements of your life that are taking too much energy, causing too much negativity, and creating too much stress, and avoid them for your own health and well-being.
I have found other communities, mainly on Facebook, that are much friendlier and more open to alternative treatments, and are not frequented by certain toxic personalities. For the time being, I will still visit those, though I’m planning to reduce my interactions across the board. I may well return before too long, but for now I am going to recharge by spending more time in the real world and in less toxic communities.
I do still plan to post to this blog; in fact, I have a backlog of posts I need to write. And I’m always happy to chat in the comments or through email.