In 2005 Arturo Porzecanski, an accomplished economist, developed a life threatening and often fatal disease called "systemic capillary leak syndrome." I'd never heard of this rare condition, in which there are sudden episodes of leakage from tiny blood vessels and a precipitous drop in blood pressure. Porzecanski was left with muscle loss after his first episode and was told that the next one might kill him. He "was very depressed and felt increasingly alone" until he found RareShare, a website whose purpose is to foster contact between people who, like Porzecanski, have rare diseases.
In my clinical practice I often referred people with significant psychiatric ailments to organizations like NAMI (National Alliance on Mentally Ill) or the Depression and Bipolar Support Alliance for opportunities to meet and hear from others with similar conditions. For many people organizations like these provided emotional support and sometimes "tips" on coping with symptoms like hearing voices or depressive hopelessness.
But for rare conditions like what Porzecanski has - the Mayo Clinic has seen only 28 cases in 25 years - the isolation can be debilitating. Despite a supportive family he felt very alone. Here's what Porzecanski says about the new website:
"RareShare put me in touch with other patients. It gave me great pleasure to put down everything I knew: all the critical articles, the world's experts, information about custom shoes. For me there was just a lot of support in knowing I was not alone."I browsed on the website. It's obviously young. Many of the "communities" have just one or two members, and not all have generated real discussions. But some, like the systemic capillary leak syndrome "community" that Porzecanski started, have the beginnings of a rich and meaningful exchange. Some, not surprisingly, have energetic reports of what to me sound like quack ideas. But that's part of human life and not peculiar to the web.
Insofar as the web and portals like RareShare facilitate creation of virtual communities in which people can "meet" others with the same condition to exchange ideas and mutual support it is all to the good. It will be important for doctors and nurses to learn about these new resources and how to counsel patients about using them.
But I fear the risk of corruption of these grassroots enterprises by commercial interests. This has already happened enough to elicit a new term - "astroturf" - for pseudo grassroots organizations driven by corporate support such as pharmaceutical companies that want to market high cost drugs for the condition. (See here for an example of astroturf I wrote about in 2007.) I hope that RareShare's business plan does not involve selling the soul of person-to-person exchange to the highest corporate bidders. If it's able to resist corrupting temptations it could make a meaningful contribution to human well being!
9 comments:
An on-line community afforded the anonymity and privacy for my patient to come to terms with the sexual abuse she suffered in childhood. She was married, had three children, and a full time job. She had buried all the feelings. She found the website on her own, and over two years she wrote, and had a roller-coaster ride of emotions, and started to find some peace.
To me, this is another example of worthwhile "alternative" or "complementary" therapies.
Hi Eric -
What a great example from your practice. In my experience people are very varied in what they can connect with and find helpful. Your patient seems to have used good judgment about what to look for and the fact that for her the "roller-coaster of emotions" was part of a healing process, not a bad sign. From the perspective of ethics it sounds as if you, like your patient, were open to the possibility that a self-guided "complementary" approach would serve her well. Sometimes physicians, alas, get territorial about endorsing approaches other than those that have been officially sanctified!
Best
Jim
Any such resources for whistleblowers?
Dear Anonymnous -
You raise a great question.
The web is a valuable resource for folks who (perhaps like you) are unhappy about the ethics of an enterprise they are part of or have contact with but who are isolated and may feel (potentially) threatened. I did a quick Google search for "support for whistleblowers." You might want to look at http://www.whistleblower.org. There are a LOT of very interesting seeming sites.
Thanks for the question. Keep up the good work, and let us know if you find especially useful supports!
Best
Jim
Thanks, but it's only for gov't types. I've done the google ad nauseum, and I appreciate your rapid and thoughtful response.
Do you have familiarity with C. Fred Alford's work? He captured my experience as accurately as anything I've yet come across, although shunning and terror/torture literature also has some applicability, but what does anyone do with "knowledge as disaster" besides "live as already dead" (his terms)?
Dear Anonymous -
Thank you for this further follow up and the reference to Alford's essay, which is very evocative and powerful. Alford conveys very vividly how the whistleblower experience can lead to isolation - from one's previous affiliations and for some one's previous beliefs. I hope your experience hasn't catapulted you into "living as already dead."
As I indicated in this posting (and others), I'm a great believer in the potential value of peer support. I wish I could have observed the whistleblower support group that Alford sat in on. (I have done something like that with people who have moved from being "victims" of severe psychiatric ailments to being "advocates" for a range of issues.) From reading Alford's essay it sounds to me as if the right kind of psychotherapy could potentially be helpful as well for folks in the kinds of situations he describes. The whistleblowing experience can act as a complex trauma, and we've gained a fair bit of experience with PTSD over the years, though largely with soldiers and victims of crime.
Again, thank you for taking the topic of the blog posting so much further!
Best
Jim
Therapy and support to what end? There is no "post" in the terror and trauma.
Living as already dead as the best possible outcome? Paradoxically, I'm relieved that you don't relate to that. No one should ever know that first hand.
The Chinese are much more ethical in that they are consistent with their stance on ethics, and they put the whistle-blower out of misery quickly with a bullet - everyone knows the price up front.
Advocacy? No one wants to acknowledge the facts let alone embrace the messenger. That is to embrace knowledge that there is no civil society and no anything other than naked predation. Tried that - mocked, humiliated, endured more predation - I think the term used in the study was "nuts and sluts". How can one advocate when one has been so dehumanized that the voice and message are distorted and received as parody? I wrote (blogs and editorial comments) for several years. No one read or responded to the substantial pieces. And of what I wrote about my experiences, they served no purpose until having discovered Alford's work, that they mirrored it and I could have saved myself a lot of time, ridicule and contempt had I read his work earlier.
Since no one will humanely end the suffering, the worthless scapegoat has to do it by himself - as usual.
There isn't any meaning in this other than a warning for others not to do it. It's the worst kind of death - an absent life.
I appreciate your response, and irony of ironies - the last whistleblowing which resulted in the theft of the last bits of a veneer of life happened at one of your own "ethical healthcare organizations" affiliates (the one that markets itself as transparent), and I didn't even realize that I had whistle blown until the threats and hostility were so ramped up that competing division heads and chiefs felt moved to tell me what was being done to me.
Support groups? Why? Unless someone has found a way to recreate a new myth/big lie and sustain himself with resources drawn from it, there isn't any movement beyond living as though already dead, and that's where I began, so will stop. Unless I am missing something, it's futile.
Dear Anonymous -
Thanks for the further clarification of how "living as though already dead" can be a protective, pain-minimizing state. Everything you write emphasizes just how volatile whistleblowing can be, and how heavy a toll it can sometimes take on the whistleblower.
Thomas Hobbes would say "right on" to your comment that "there is no civil society and no anything other than naked predation."
Your vigorous writing doesn't sound like someone who is giving up on blowing the whistle, whether in relation to particular organizations or society itself.
Good luck!
Best
Jim
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