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.
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(Liz) How and why did you start welcoming people? |
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(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. |
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(Liz) What type of responses do you get from people you welcome? |
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(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. |
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(Liz) Do you keep in touch with people you welcome? |
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(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. |
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(Liz) What is one thing you’ve learned from looking at new member’s profiles? |
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(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. |
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(Liz) Do you feel more engaged with the site and its members as a result of the Welcome Wagon? |
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(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. |
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(Liz) We’re glad you did too. Thanks so much for keeping the wagon rolling, Diamondlil58. You’re an inspiration. |
diamondlil58 is so inspiring and I am amazed at how she is able to keep up with all she welcomes. Yes it’s true, she is a diamond! I also want to thank PLM for this site, I may read more than I write, but everyday I learn something new and have found myself sharing with people at my local support group.
I am so glad you finally interviewed Diamondlil58!!
When I found out how much she was doing in the background, I wrote to [the community moderator] telling him that she really should be in the patient spotlight.
She’s a true gem and a very dear friend. There is so much more to her than you know.
Diamondlil58.. keep up the GREAT work. Let me know how I can help!
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My dear friend, I am truly honored that you make mention of me here. You have far surpassed anything I did! I think I welcomed over 5000 members, but by keeping the wagon rolling, you’ve helped so many people! You are a bright and shining star Lil, and I am so happy to call you my friend. Keep on welcoming new people girl! You are making a difference in many people’s lives, and they will never forget you for that. I love you more than words can say!
Congrats girl this is so great to see. I know there were times it was hard to keep up with so many new ones coming to PLM. I am sp proud of you and humbled to call you friend, again congrats