I would say most importantly use the support boards for what you need. If you feel like hearing someone’s success story, look for those posts, if you feel like reading about someone who’s been through pain as bad as yours or worse, read those and share kind words… Share your story and see what comes back to you. Definitely avoid seeking out the scariest things you can find on those days that anxiety is taking over… But for me, this group always helps me feel normal, understood or evenidentify what problems of mine fit under the lupus experience.
For me, instead of being scared of lupus (though I do get that feeling sometimes), I was relieved to know there was an explanation for the health problems I had always had that were getting kicked down the line and passed from doc to doc like a soccer ball. Instead of worrying what a “flare” might be, I inatantly identified flares I had throughout my life back to around age 3!
Basically, a flare is a worsening of symptoms all at once (or over a short time, like days to weeks) that may go completely away afterward on its own after proper rest (like all the flares I had until about my 20s) or may increase persisting symptoms afterwards until treated with medications (like I’m trying to do now), or may persist despite treatment and cause lasting discomfort, dysfunction or disability (like I’m hoping will not happen but am trying to prepare for, practically and mentally/spiritually!) The longer periods of more symptoms versus less (or even no) symptoms, which is active disease/“lupus activity” versus remission. A short flare can cause sustained or increased lupus activity after the worst of the flare calms down, or just go back to the prior levels. Lupus does not necessarily progress over time, but it can with each flare, or it can quiet down again after months or years of high activity.
The good news is that being diagnosed with lupus doesn’t mean things will get worse (though they probably would have if you didn’t know about it and didn’t treat it with lifestyle changes and medical treatment), and it’s treatable (unlike IBS, which I also have, that just lets you know you have an abnormal and difficult condition of your body without any treatment or reversal options!) Thus, due to changes you can make, will likely get better than it has been recently and it may never get as bad again! The bad news is that there is so much mystery and uncertainty in both the day-to-day and the long term, and the “prognosis” merely reveals itself as you go along (but that’s reflective of the reality of life itself, is it not? We just learn to take things as they come, plus proactively modify our responses and actions, more fully than most people ever could. Is a life that aware/intentional really such a bad thing? I see it as a gift, albeit a frustrating and difficult one to carry!)
The best self-care you can achieve will make a huge difference no matter what severity or pattern of lupus you have, so it’s of highest importance to know yourself and what you need. That includes when to seek more information, examples, warnings or shared-experience stories, plus when to tune it out! Perhaps the most useful thing on the message board is to describe how you’re feeling today, or read about what someone had felt other days, and know that although that may never happen to you, you’ll be aware and ready to handle it when it does and know how to find comfort, support and resources from the community! With so many around us, even our own doctors and families, who don’t really understand, it’s definitely a gift to have this community of wisdom, care and true sympathy available whenever and however we need it
A note on helping others: you can just share your own story or questions; that can help a ton! No need to worry if you have answers and feel free to just read. Just like with lupus, there’s a right time for everything, and it’s important to fight for what’s right for you. Being you is enough for us!