The flak evangelists draw

Edited 7:45 pm – saved some content for a later post

I need to get this off my chest. I know to some it will sound like whining. Well, it’s my blog and my life, and on my blog I get to express myself.

One of the challenges of this path I’ve chosen – evangelizing in social media, starting with no business model – is that the more visible I’ve become, the more people have…

  • …plucked at my sleeve saying “I know you’ll love this – I just wrote it- please read it” or “please review it.” Truly, I wish I could, but I can’t. Sometimes it breaks my heart. But it disgusts me when people get mad at me or interpret it as me not caring.
  • …implored me to come speak for free, or almost for free, because “We’d be so honored” or “You come highly recommended.” Most people who do this can understand when I say I can’t give my time away – I have no day job so I have to be responsible and I’m committed to not failing in this business, which would demonstrate that it’s a cause with no foundation or grip on reality … which would in turn discourage others who want to follow this path. But some persist, as if they didn’t understand – or as if I were a vain academic who just needed more flattery. Might work for some, but irrelevant to me.
  • …asked me to evaluate their ideas for everything in the world. Folks, I wish I could. If I were a tenured academic, or had a comparable job in industry, perhaps I could. But any time I’m not earning, I’m running down my self-funded account.
  • …asked me to write something for their blog. Oy, if you saw my own backlog of things I want to write about on my own sites…
  • …questioned whether I really wanted to use the language I used. Yes, I choose my words intentionally. You’re welcome to unfollow – be empowered! :-)
  • …asked me to come join their discussion forum, which they’re sure I’ll find fascinating. Honestly, I’m sure I would!
  • …asked me to do a free webcast or unrehearsed interview. See above. I do these when I can, because they don’t require preparation and I can do them anywhere – even from a hotel room. But usually my time is full.
  • …persisted in asking me to run theirsponsored” (paid) text on sites that I manage. (In other words, I have traffic and they don’t, and instead of earning traffic, they want me to sell some.) Did somebody write books telling these people bloggers are hungry for content?? Not the ones with a cause… but some hucksters don’t get it.  One such exchange with an “SEO consultant” named Ryan recently ended with this:

Don’t be a faggot. Enjoy dying a miserable, lonely death you crusty old sack of sh!t. Crap like this is the reason you’ll always be poor.

Do you even lift?

Boom, owned, bye faggy boy. :)

I’d like to do it all (except the whiners and jerks), but I have doctor’s orders not to get exhausted because the best available data (which isn’t very good) says there’s a 50% chance my kidney cancer will return some day, and it matters that I get rest.

Plus, I love getting in bed with my wife.

So I no longer average 1-2 all-nighters a month, and frankly I’m glad. (My Zeo sleep monitor was part of convincing me about that. Funny thing about the value of data to raise awareness!) And I no longer say yes to speaking invitations that would require impossible contortions of air travel.

And I’m trying to write two new books this year – books that need to be written, to define the field.

So, as uncomfortable as it is, I have to sometimes say “Leave me alone” to the pushy and whiny ones, and to the earnest ones say “I wish I could. I truly wish I could.” But it’s a sign of health to know your capacity. And ability to say “no” is fundamental to being empowered and responsible.

I applaud everyone who’s joining this cause and wants to move the ball up the field!  I’ll help however I can, when I can, but not more than I can afford.

To those who understand, thank you.

And to SEO Ryan: up yours, and get a life. I wish I knew who your “client in the tech sector” is, so I could share our full thread with them. Boom, owned. :-)

32 comments to The flak evangelists draw

  • I heard you speak on BlogTalkRadio yesterday with Shirley Williams and it was interesting to hear your history and how you became an evangelist. It’a a feat to accomplish all that you do, let alone for to imagine your life if you did everything you were asked to do.

    I had a flight with one of the bed/seats once and it was the best part of the trip!

    Not sure if you should toss flaming heads at those ill-wishers or go to Scrooged – the movie and “scrape them off”

  • Christine Kraft

    What a post, Dave. You owned it, boom.

    My two cents as an observer/colleague/friend over the last 4 years:

    In a space filled with a bad case of the gimmes you describe what it feels like to carry the emotional burden of an industry.

    Folks like you — cast into the role of the professionalized patient — continue to provide a north star for us. You all are the soul of a new machine. (This line borrowed from Tracy Kidder’s 1981 book of the same title).

    So when you say, “I’ll help however I can, when I can, but not more than I can afford,” you help reinforce what patient empowerment is all about. It’s about working to establish equity (financial and otherwise) in the marketplace of industry ideas.

    It also dawns on me that some of what you are “getting off your chest” is an archetypal expression of the undervalued caregiver; you are caring for an industry in great need.

    Much to think about.

  • e-Patient Dave

    Christine, from the start of my advocacy you’ve been an amazing “north star” yourself. I’m happy that this resonates with you – and as usual you brought a new level of thinking to it.

  • Yes.

    It is very hard to find the balance in the work we do for the cause and the work we do to just stay afloat. Guest blogs, book reviews, webinars and paintings that are impart understanding are so important to the mission, but do not pay the rent. When I buy 4 jars of the generic spaghetti sauce and noodles because then I can stretch 10.00 into 4 meals for our family, I thank God I grew up poor so I know how to live this way. But I often wonder, do those who make such requests know what they are asking of me and of my children.

  • You’re doing good for the world, Dave. Just keep it up in whatever way works for you. Your points here are sensible and thoughtful. Some will understand, some won’t. I know you treat people kindly, and that is all anyone can ask.

    • e-Patient Dave

      Thanks, Paul; the issue, of course, is that some folks clearly think that’s *not* all anyone can ask.

      I’m sure with your level of experience and exposure you’ve gotten much more than I have. How do you deal with it? Do you try to engage, then ignore if they don’t honor your response?

  • I love all the comments so far and would like to offer a playful mental image to transform the Grrrr into a Ha! When you get one of those “please just one hour of your time” emails, picture yourself as a kid getting a birthday card from a relative, shaking the envelope to see if a check will fall out. Huh, no check? On with the day, lalalala.

    • e-Patient Dave

      Susannah, I agree; but also consider, with a cup of tea and a few minutes, this longish (obscenity-bearing) post on Cracked.com, from a friend after reading mine: 5 ways you’re accidentally making everyone hate you.

      Especially #2, she said: “there’s no good way for a busy person to tell you they don’t have time for you. It always comes with the implication that they’re a bigger deal than you are. And as we established earlier, the only thing worse is to say nothing.”

      I must say, though, that I’ve often used a sane method you taught me: “Please, dear writer/reporter/blogger, review the site I’ve compiled for your easy efficient reference. Then if you have additional questions, let’s talk.”

  • We all can learn from this, Dave. Like you, I’m amazed at the numbers of people looking for free stuff. Brazen. Weeding the garden helps the good stuff grow.

    Looking forward to the books…

  • A-ha, my strategy of posing as SEO Ryan worked! Gotcha, Dave!

    (I’m amazed I had time to do it!)

    • e-Patient Dave

      Whoa, what magic dragged MATTHEW out of the clouds?? Hahaha…

      For the record, although Matthew has been known to ask if people would do something for free, he’s (a) highly competent, not a bozo making a business out of donated labor, (b) never whines in response to a “no,” (c) has also *been generous in return* with occasional advice that I’ve asked him for.

  • Dave, thank you for this and so much more. As I keep on learning and try to teach my children, it’s all about respect. Your message, your work, is all about respect, and I know from plenty of experience you are respectful. It’s absolutely appropriate that you expect the same, indeed it would be hypocritical not to.

  • Dave – as the patient empowerment ying to your e-patient yang, I hear you and say DITTO loud and clear.

    Like you, I’ve been lauded and praised, but just as frequently insulted and slammed by not just patients who ask for help, but by those “professionals” who ask me to do things for free when we both know they will profit mightily from my contribution.

    Now, with 8+ years of this under my belt, I’ve learned to hit the “delete” key, mutter a few choice words under my breath, and just be thankful I have that option.

    When things get particularly difficult, I try to flip my thinking all together, remembering that if I am frustrated by these exchanges, that the person who hurled it must be even more frustrated, plus threatened by his/her situation, fearful and desperate.

    I am none of those, and so will continue my journey and sharing.

    The pluses of knowing my work benefits many far outweigh the negatives of those who are bent out of shape.

    Trisha Torrey
    Every Patient’s Advocate
    http://www.EveryPatientsAdvocate.com

    • e-Patient Dave

      Those who don’t know Trisha and her work should go look at her site, http://wwwEveryPatientsAdvocate.com. Perhaps more than anyone I know, she’s figured out how to make a viable business out of changing the world. She doesn’t haul in a ton of dough, but she keeps herself afloat while training, empowering, and enabling others – sharing her knowledge in a way that “the market” finds valuable, and can pay for.

      She’s also managed to produce multiple books, which is NO small feat on top of everything else, as I well know. And it was her site where I found the trick of displaying the logos of media outlets who’ve mentioned her. Smart, effective at implying “What I say has been recognized,” etc.

      Trisha and I are different – I love traveling and speaking, her not so much; sometimes we clash on specifics; she’s good at things I’m not; etc. But clearly we share this experience, as well as our commitment to making things better.

      (Plus, her patient awakening story is very different from mine – if you haven’t read it, you should.)

  • Thank you for this, Dave, and thank you for being you!

  • Dave I feel your pain. I get requests ALL the time for all sorts of stuff (listen to my CD/ this song and maybe you’ll want to sing it, can I guest post on your blog, can you teach me how to use facebook/ social media, and of course lots of health questions because I’m a certified health coach but they want free advice), and I say yes WAY too often, and it does interrupt my workflow- the stuff of my life’s purpose. Why do people think I owe them something? It’s OK to ask, but asking and demanding are two different things.

    • e-Patient Dave

      Hi Carla – I didn’t realize you subscribe here – awesome!

      Folks, Carla Ulbrich is an e-patient as in “the key of e” – The Singing Patient. She’s the author of How can you NOT laugh at a time like this (a sentiment I often felt) and 5 CDs including one that I have, “Sick Humor,” including well-done parodies like “On the C’mode Again,” “I Got Tremors,” “Patient 2946065″ (from “867-5309″), etc.

      Carla, I didn’t realize you’d become a certified health coach – perhaps you should connect with Trisha’s AdvoConnection.

  • The problem with the Internet is that some people take advantage of the anonymity. As part of the patient advocacy community, I apologize for the dopes who act badly.

    We may respectfully disagree about semantics (like patient empowerment). That’s a phrase a used to like but now dislike. I still like reading your stuff.

    Your voice is important.

    • e-Patient Dave

      Well, Cheryl, of course he emailed me, so there’s no anonymity there. :) And what’re YOU doing apologizing for dopes? :) :)

      (Re semantics of “empowerment,” it all depends what you say you’re talking about… in my speeches I’m quite specific about it, for that reason. But that’s what semantics is, eh?)

  • ShimCode

    Dave

    Let me know if you ever find out who this disrespectful SEO Rat “Ryan” is…I’ll get my two friends from Chicago – Guido and Annunzio – to go massage a little sense into him.

    :)

    Steve

  • Pam

    In your talk you mention a doctor who explained something that you had misunderstood when reading and, when you apologized to him, he said he was happy to field your questions. What if he’d rolled his eyes (y’know, over the phone) and said, “Read the thing carefully, please, and then if you have additional questions, let’s talk.”

    I’m sorry you get obnoxious flames like the one you quoted. But does the sender really lump in with people “plucking at your sleeve” because they have something they are attempting in good faith?

    I think what bothered me enough to write was “5 ways you’re accidentally making everyone hate you” linked above. The author of that thing certainly made me hate him, and I’ve never met him. Get some sleep, unplug the Facebook, and figure out how far away on the spectrum you want to be from a guy like that. If you need to set boundaries, set them. I realize you finish your post with the recognition that these things are yours to do. But regardless of income source, mission or heath status, every one of us has these same responsibilities. Even those of us who try to have the least possible truck with social media.

    • e-Patient Dave

      Meaty comment, Pam.

      > what if he’d rolled his eyes

      That’s common; I would have asked someone else until I found answers.:)

      > does the sender lump in with others

      No, not at all. That one was a worst-case example of someone who expects a blogger to drop what they’re doing or at least fit their desires into our busy schedules.

      > unplug the Facebook, get some sleep

      Actually, I’ve been getting more sleep this past year, by far, than in the previous two. By pulling back on how much I agree to do…:)

  • Gilles Frydman

    Why am I coming late to this great party? Great post, Dave!

    It’s time to turn the tables upside down. No one would dare asking a busy doctor to provide ANYTHING for free. Why should it be different for a busy e-patient? When we talk about equality in the partnership or, even more, in the deeper view of equality of all HC stakeholders, that equality should apply, first and foremost, in how time & influence are measured, EQUALLY.

    • e-Patient Dave

      > No one would dare asking a busy doctor to provide ANYTHING for free.

      Well, actually, they do – Dr. Brian V (above) is one example, and I’m sure any other doctor who blogs gets the same. The problem (or one problem anyway) is that some fools have written books (or blogs) convincing other fools that the key to success is to suck up to well connected bloggers, who (they say) will LOVE the free publicity …. and will publicize THEM in return.

      A sucker deal. Sorta like selling a book on “How to get rich selling books on how to get rich.”

      LinkedIn pulled something like this, this past week. They sent emails to people (not me) saying “Your profile is in the top 1% / 5% / 10% of most viewed profiles! Congrats!” And guess what: most of those people went around talking about LinkedIn.

      And a few months ago I was courted extensively by a company that seemed really interested in my “expertise” about social media and patient networks – a company backed by a well known venture capital firm, who apparently encouraged the dialog. Well, it turns out the company never came close to offering me any kind of an engagement. So as far as I can tell they were either sucking my brain for free about e-patients OR maybe hoping I’d blog avidly about how great they are.

      Well, it ain’t gonna happen, and I emerged with a sense that the venture capital firm is a bunch of predators.

  • Dave,
    Thanks for this. Enmeshed in overwhelm, an over-flowing inbox of asks taking my time, I’ve hit a moment in time in my career where I’ve realized I’m just now starting to pedal backwards.

    I’m getting diluted.

    The amazing thing is you’ve just fortified yourself. Concentrated your efforts and defined a margin. From a pitcher of lemonade to a 12 oz can of frozen concentrate. Thank God you have the esteem to do so. This way we’ll all get more from your pioneering voice.

    • e-Patient Dave

      Well, Dr. Amazing (and I mean it), if I have in any way whelped a useful perspective for you, I’m thrilled.

      And I’m not surprised that you have no end of requests, where people “dare ask a doctor” to do something for free.

      (Um, I’ve been known to… and heaven knows I’m now asking them what everything costs…)

  • PS— I’m a doctor and people ask me every single day to do things for free. The public, the media, my patients. All of them. They use very similar words that you offer up in the post.

    I do as many things as I can. But I’m just so freaking tired….

    • e-Patient Dave

      > I do as many things as I can. But I’m just so freaking tired….

      Every year or so I’ve reached another crest, another high-water line, where I have to say “Dave is full.” And I draw another line, beyond which I will not go. Then, inevitably that line fills up too. So it’s apparent that knowing when to say “Dave is full” is not a one-time task -it’s an ongoing way of being.

      And I bet for a clinician it’s useful to be able to model for one’s patients: setting limits and respecting one’s health is a good life skill.

      It helps to have an amazing family, well worth going home to. And a bed I love to get into, as I said.

  • Dot

    Dave,when I heard you speak, recently, I noticed that you were overly concerned about getting everything in, then speeding up, and getting rattled, because, I believe,of your high expectations for yourself. I wished I could say, “Just breathe, let it go, it’s all good”, as I do to my patients. The audience was (some) overwhelmed by the info, and the demographic, would’ve been well-served by less. In other words, Conneticut and rural No Ca, are not at the same level of your more upper-middle class audiences. Give yourself a break, we will love your spirit just as much, if you’re relaxed and enjoying life.

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