The Value of Openness by PatientsLikeMe ®

To close out this week’s blog series (“One for All”), we bring you an interview with another noted “welcomer” from our Fibromyalgia community.  Meet Babsie.  A member of the 19,000-member community, she has commented on hundreds of patient profiles to date (which is highlighted in a graphic on Jeff Cole’s earlier blog here).   Read on to hear what Babsie has to say about why she joined the Fibromyalgia welcome wagon and what keeps her going.

	(Liz) Yesterday, we heard from MS community member, Diamondlil58, about her experiences welcoming members.  Why did you start welcoming people to the Fibromyalgia community?
	(Babsie) Someone welcomed me, and it made me feel good.  I never saw them on the forum, so after a few months I was curious and seeing the new patients without any subscribers or comments I would subscribe and make a comment.
	(Liz) What type of responses do you get from people you welcome?
	(Babsie) Always favorable and kind.  Some prayed for me and others became friends outside of PatientsLikeMe.
	(Liz) Do you keep in touch with people you welcome?
	(Babsie) Yes, in the forum; it is easier so I encourage people to post there. I monitor the Patients Tab and if they update I respond. I can also look at my own subscribers anytime I wish to send them a Private Message.
	(Liz) What is one thing you’ve learned from looking at new member’s profiles?
	(Babsie) Invisible disease is no respector of persons, young and old, their economic status – does not matter.
	(Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
	(Babsie) Yes, if I am feeling isolated I go and invite others to participate.
	(Liz) Thanks for all the connections you’ve made just by inviting others to participate, Babsie!

We’ve been learning about how connected our patients are this week in our blog series called “One for All.”  In the first two blogs by Jeff Cole, we read (and saw through cool graphics) how some of our members are initiating an unparalleled universe of dialogue.  Today, we sit down with one of those members, Diamondlil58.   A true “diamond” in the MS community, she has left more than 16,000 comments to  welcome other members and get conversation started. Here’s our interview with one of the founders of our PatientsLikeMe “Welcome Wagon,” Diamondlil58.

	(Liz) How and why did you start welcoming people?
	(Diamondlil58) I was welcomed to PatentsLikeMe by two lovely ladies – JHCamero and Greeneyes.  Their messages made me feel welcome. I wanted to give back to the MS Community.  I didn’t feel that I knew enough about the disease and the effects it had on others to offer advise in the forum.  But, greeting people is something that I felt comfortable doing.
	(Liz) What type of responses do you get from people you welcome?
	(Diamondlil58) I have received many nice replies from new patients.  Some tell me their experiences,  others ask questions or request help setting up their profile page.  Some want to know my view on therapies and treatments.  I continue to welcome because it has been rewarding to me.  I understand first hand how scary the MS diagnosis can be; how friends and family can’t possibly understand what it’s like to feel the way we do; how we can be perceived as lazy; or the fear of parking in a handicap parking spot and hoping no one verbally attacks us.  Welcoming give others an opportunity to view a profile and helps them see what they can do with theirs.
	(Liz) Do you keep in touch with people you welcome?
	(Diamondlil58) I do keep in touch with so many people that I have welcomed through this site.  Some through Facebook, others in email.  I’ve even met several in the past year or so.  I have built some wonderful friendships here and make more everyday.
	(Liz) What is one thing you’ve learned from looking at new member’s profiles?
	(Diamondlil58) That we have all different backgrounds.  That we are not all the same but we all share one thing in common and that gives us something to build on to support each other.
	(Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon?
	(Diamondlil58) Absolutely!  I wouldn’t do it if it was negative or wasn’t rewarding.  It’s my way of giving back to the MS Community.  I have a great appreciation for the founders of this site, the staff, and the caregivers that join us.  This site has been therapeutic for me in more ways than one, and I am so grateful that I came across it three years ago surfing the internet looking for information on my symptoms.
	(Liz) We’re glad you did too.  Thanks so much for keeping the wagon rolling, Diamondlil58.  You’re an inspiration.