Turns out, not every MSer is my peep

A few weeks ago I took a call on the MSFriends (MSF) helpline from a “C___” in [state deleted] who was just calling to talk.  She was suffering from a migraine because she wasn’t able to take any pain medicine preemptively before she had driven herself to the appointment for her annual MRI and back home.

I started to respond sympathetically to her story when she suddenly had to ring off so she could answer her other line.  She apologized and hung up.

Now, in addition to the MSers I meet doing my volunteer work with MSF, I have long been a member of PatientsLikeMe (PLM), a website where MSers, or individuals with other chronic conditions, can create an account, pick a screen name, and start using tools to record and share symptoms and anecdotes with other MSers.

On this particular night I was reading the different message boards on the PLM website when all of a sudden I read the exact same story I had just heard by a user named C___ in [state deleted]! I have come to value other MSers helping each other wherever we connect up and thus was so excited to discover another way to reach out to her. 

So, maybe over-zealously, I sent her a Private Message (PM) telling her that although I had just been “lurking” (meaning hanging out but not posting much–or at all–in internet forum talk) in the forums, I recognized her same story there, as well, and wanted to reiterate that I was sorry she was having a bad time.

Although I was enthusiastic about recognizing her story in another context, and happy to possibly have another way to connect with her, I was not so enchanted that I would violate her privacy by publicly writing her.

But she immediately recoiled, as if I were stalking her (likely misunderstanding my use of the word “lurking” which, now that I think about it, does have a creepy connotation!) [N.B. Just because someone is comfortable with the message board application and posts regularly, doesn’t mean she’s familiar with the slang.]

She instantly started a new thread (an initial message board post to elicit other comments) on the PLM Forum entitled “I won’t be calling MSFriends again” and thus outing herself as an MSF caller. 

Horrified, I posted to it myself, apologizing, but also pointing to my PLM profile where it showed that I had been a member since March 2008, way longer than I had been answering phones for MSF.  Then, I invited other PLM readers to volunteer at MSFriends and gave the web page address.  

I then wrote an email to the MSF coordinator, apologizing for the negative feedback

But obviously not everyone immediately trusts that MS community members are actually MS community members and so can be found across multiple venues.

I have learned my lesson: don’t PM anyone outside MSF that I recognize from MSF.  Even as a follow-up to an incomplete call.  Even with the best intentions.  Just leave it alone.

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