As of yesterday, In the Kingdom of the Sick is officially available in bookstores and online.
I have so much more to say about all of this, and about writing and audience and lots of other things, but this week, I’m simply juggling virtual events, in-person events, the end-of-semester crunch, and the like.
So let me say the most important thing of all—thank you! To those of you in real life who have supported me and helped me find time to write, to those of you who are virtual cheerleaders, to those of you who gave me your time and insights along the way, and to all of you who have shared links, posted items, and plan to read the book. I can’t wait to hear your thoughts.
Yesterday, I had the pleasure of doing a Q&A with Paula Kamen over at Ms. Magazine’s blog. There are lots of other links to share in the coming days, but here’s an important update: my segment for Fresh Air will run tomorrow, April 11. The show runs 1-2pm; check your local public radio stations or listen online.
(I will be doing an Author event at Northeastern during that time, so you’ll hear it before I do. Be kind ☺)
Interesting to listen to your fresh air piece after npr’s morning edition had a piece on Tor Wager’s brain scans of pain.
Thanks! I know, I saw that piece this morning and it was fascinating.
I just listened to your interview on Fresh Air, and it was fantastic! I’ve been living with migraines among other disorders, apparently, for years and all of your points about living with chronic illness and the need for more research (both in terms of more gender-specific and more focus on rare or hard to diagnose illnesses) resonates with me deeply. Thanks for doing what you do and being so candid about your personal experiences with illness. Keep up the awesomeness! 🙂
Thanks so much for the positive feedback!
I was deeply moved listening to segments of your interview on Fresh Air tonight.
I encourage you to apply to share your story at next year’s TEDMED conference (you seem like such a natural, I first checked to see if you were already in the lineup for this year’s conference).
http://www.tedmed.com/
You’re probably already aware of these organizations, but just in case, I think you would find receptive audiences in both of them:
http://participatorymedicine.org/
http://www.rarediseases.org/
Thanks so much for the kind words. I am a huge fan of TED and TEDMED, so your comments are truly a compliment.
Love that you linked to those sites, as I discuss participatory medicine in detail in In the Kingdom of the Sick, and e-Patient Dave deBronkart is an interviewee in the book. They are doing great stuff!
Thanks again,
Laurie
After 48 years my son was just diagnosed with PCD. When I heard the radio ad for the Fresh Air interview with a woman who had a lung disorder that wasn’t diagnosed for twenty years, I knew immediately what your subject would be. I just listened on line and must tell you that you are right about validation being so important. The mystery condition is now in the past, and getting the diagnosis is the beginning of a new phase. Thank you for bringing this to light.
Thanks so much for the note! Yes, validation is so incredibly important, and being able to more effectively treat and manage a disease because you finally have the right diagnosis is truly life-changing. I hope your son experiences those benefits!
Hi, i’m Sheila’s son Mike. I enjoyed listening to your story, it woke me up a little that i need to start taking my diagnosis more seriously. I’m a bit numb to dealing with it all at this point, but i know i need to jump on it now while i’m currently healthy. Like she intimated it’s literally taken my entire life thus far to find out exactly what i have. I always knew it wasn’t just asthma, but as i’m sure you know doctors tend to just try and treat the symptoms of the moment and not really dig any further, even though there’s visual clues that i don’t have your normal everyday asthma, and 98% of the asthma treatments don’t work. I’m starting respiratory therapy and trying to commit myself to living a healthy lifestyle. Nice to meet you…
Hi Mike,
Thanks so much for writing. I totally hear you–for years, I felt like all I did was take higher and higher doses of steroids, to the point where my adrenal system crashed, yet my lungs only got worse and worse. It’s definitely a process, I know, getting the diagnosis and then adjusting to the new treatments and interventions. Several years into this “after” of getting the right diagnosis, I can say without hesitation that the adjustments are ultimately worth it. That’s not to say it is easy, but the trade-off–feeling better–is great. Please let me know if you have any questions about PCD, respiratory therapy, etc.
I just heard about your interview from a friend as I have been suffering with an as yet undiagnosed illness; multiple respiratory infections, severe GI problems, pain, dizziness etc.Many of these issues started from birth, literally. I am going to look into PCD as a result of your interview. Thanks for your courage in writing your book. I’ve been thinking about writing about this for years; the stigma of chronic illness is so intense; but never got up the courage or the energy. I can’t wait to read it!
Thanks for the comment. If anything from my interview proves helpful in identifying an accurate diagnosis for you, that would be so wonderful. I wish you all the best on your journey towards answers–I know it isn’t an easy one. Would love to hear your feedback once you read the book!