She tells us not to be sad, but this is one of the saddest librarian blog posts I have ever read: "Hello. My Name is Sarah, and I Have Ehlers-Danlos Syndrome," by Sarah Houghton-Jan, LibrarianInBlack.net, 29 May 2009.
I don't know what to say to Sarah under these circumstances. I can only hope that my helping her spread her message about EDS will at least give her another smile.
Sarah concludes her blog post with these words:
So, to conclude ... please do not be sad. Be educated. That is what this post was all about, after all. So, what can you do to make my confession worth it?
- Remember what EDS is, what its symptoms are, and maybe you can help someone else who doesn't know what's wrong with them get an early diagnosis and treatment.
- Be patient with me as I have my bad days, weeks, or months. I am not ignoring you, I just can't muster the energy or get through the pain to do what I have to do sometimes.
- Donate to the Ehlers-Danlos National Foundation.
- Buy flowers through EDNF’s FlowerPetal.com site and a portion of the sale will go directly to EDNF.
- And finally, if you want to learn more, watch this longer video about a woman with EDS, the effect on her life, and her process to diagnosis.
Thank you all for your support, especially those who have known of my disorder and support me through patience, kindness, and making sure I get enough rest at conferences (thanks Aaron!).
Watch Ehlers-Danlos Mystery
NOTE ADDED 14 MAY 2011:
Good news!! "Do You Know What Ehlers-Danlos Syndrome Is?," by Sarah Houghton-Jan, LibrarianInBlack.net, 13 May 2011.
NOTE ADDED 15 MAY 2012:
More good news!! "May is Ehlers-Danlos Syndrome Awareness Month," by Sarah Houghton-Jan, LibrarianInBlack.net, 14 May 2012.
NOTE ADDED 2 MARCH 2013:
- "Stalker Assaults and Librarians Harass Librarian In Black; ALA Should Support Sarah Houghton and Other Beleaguered Librarians," by Dan Kleinman, SafeLibraries, 2 March 2013.