A few weeks ago I read a blog post written by a young woman who has rheumatoid arthritis. She was musing about whether disclosing her day-to-day experience was a good idea for her.

computerflareIn this column and elsewhere we have discussed the benefits and potential pitfalls of disclosing your diagnosis, but what this woman was pondering was something slightly different. She focused on social media, and how she wanted to show up there. Should she tweet about a flare? What about posting what a lousy day she was having and how she had to miss an event she was looking forward to? What about the days she felt great – could she post that and not lose her credibility as someone who really did have an “invisible illness”?

Her dilemma and the open way she framed it struck a chord, and I began to discuss with my clients how they handled their social media.

Here is what I learned.

There is not one way to do it, and no “right” way.

It depended on the needs, the temperament, and the age (!) of the person whether it is helpful to post about bad days as well as good days. Some folks integrate their illness and their symptoms into the online self, ”Off to take the afternoon lie down!” one tweeted. Others don’t see the benefit. Some want their posts to be an authentic reflection of their life. Others just use it for fun, or more general sharing.

An important question is, what are you willing to get back? In the blog post I read, responses to posts about days of pain and difficulty varied widely. Some got it right away. Others were puzzled and asked questions (which required more posting). There were the to-be-expected posts about “my grandmother’s arthritis” or “have you tried the anti-inflammatory diet?” But the most difficult were the absence of responses from people she expected to empathize. Nothing from some people. Nada. That hurt and bewildered her.

My clients agreed that the absence of comments from friends was the most difficult aspect of public sharing.

Which leads me to learning #2.

If you want to use social media as a place to share and be yourself, it works best when you  coach people how to respond.

It is not so different from regular life where you “train” those close to you what is useful to say to you and what should be avoided! They can tell from the look in your eye, or the way you wince when you bend down how to interact with you. They have lots of experience, and still don’t always do it well.

How much more our Twitter fans and Facebook companions and Instagram followers need some help.

It is possible to end a post with something like, “Just venting! No need to respond.”

Or, “ looking for a shout out of support – it’s a tough day.”

Most people don’t know what to say to sadness, or depression, or expressions of pain and anger. So they say nothing because they are uncertain. Help them out with a tagline. Let them know what would help in that moment (knowing that tomorrow you may ask for something else)

You can always use privacy settings.

You may want the stage of your social media places to share, but not want everyone to read them. You may want to share even more specifically. One client had a private Tumblr account she used to write out how she felt about each day. A few select folk had access and could check in to see how she was feeling. That place of authenticity, which could be shared, and controlled, was important to her as she managed her life in new ways.

You can always change your mind.

This is a place where you can experiment with what seems best for you.  You can try it, and see what it’s like, and you can take it down. You can start small, on one platform, and see how it goes. Or you may decide, like the blogger I read did, that you aren’t going to use social media for this at all.

It’s a tricky business to navigate – you may think it will go one way, and you find you want it not to be such a big deal, or you wish it would be a bigger deal and people who now know how hard it is for you to get up in the morning would be a little more sympathetic.

So, experiment and see what helps you the most, and what suits your life.

As always, let me know what you think!