Tuesday, April 5, 2016

Not holding back

I recently received the following email:
Feb 23, 10:30 PM 
In the same boat... 
Hi Richard,  
I was going to apologise for the unsolicited email but then I realised that it was probably how most emails - the ones you may choose to ignore - start, so I will begin by saying thank you. 
I came across your blog "My real life unnecessary nightmare" and it helped me. It showed that there was a life after "mysterious illnesses", IT builds resilience and strength, you learn to re-assess yourself/your life, build yourself in ways you couldn't have, had you not had this illness. Most importantly it is always a relief to hear or to read that it is not all in your head. 
I don't believe in fate but it is a hell of a coincidence that you happen to be working or specialising in the field I aim to one day. It is inspiring, you inspire me and all I wanted to say was thank you, thank you. 
Marie
You are most welcome, Marie. I’ve received several messages of this nature over time, and I’m always very touched.

However, I’ve also received several messages of anguish and frustration from people struggling to make sense of their own situation and looking for specific information in my blog that will provide relief. I am upset by the pain they are experiencing and the failure of their doctors to provide needed relief, but I don’t have names of other doctors they should contact or details of the treatments that they need.

If you find yourself in a situation similar to that in which I found myself, don’t give up hope. Read the advice given by Susannah Cahalan in her wonderful book, “Brain Wreck: A patient’s unrelenting journey to save her mind and restore her spirit”; I quote a subset of her advice in my post, “Not giving up, and giving forward.” Read “Questioning Protocol,” a wonderful book by Randi Redmond Oster which is filled with great advice; some of that advice is available via Randi’s “Help Me Health" website and her "Help Me Health" Facebook page. Check out online communities such as patientslikeme; perhaps they will yield the information you need.

You are probably not pleased to be told to go read more things, but I don’t have the answers both you and I wish I had. You might find that Susannah and Randi and patientslikeme don’t have those answers either. But I believe that those of us who have written about our troubling experiences with the healthcare system have provided about as much information and guidance as we can. I don’t believe we’ve been holding back.

Once you've uncovered the specific information that ultimately provides you with relief, please tell your story in a similar or better fashion. At the minimum, please let me know.

Friday, December 25, 2015

Why is it so easy to forget?

Two weeks ago, my co-instructor Wei led a session on “Diversity in Tech” in the UX Design Immersive course we teach for General Assembly in Austin. Somehow, the discussion shifted focus temporarily to the topic of homelessness, and I became dismayed at the extent to which some of the students appeared to rely on stereotypes when describing the Austin homeless. This occurred at the end of week 9 of the 10 week course, and the concept of empathy — a concept addressed repeatedly throughout the course — seemed to have been forgotten by some. Hmm… Having been homeless myself (as I’ve reported in this blog and elsewhere), I found myself becoming angry, but I (perhaps too easily) managed to hold my tongue.

The following Monday, I posted three links to the class Slack channel. One was to an article about the Rethink Homelessness project during which several of Orlando’s homeless were asked to share one thing about themselves that those walking by them would probably never expect. The results were “poignantly humanizing,” as reflected in the nearby image, one of many presented in the article.

Another link was to a similar article by dana boyd entitled, “San Francisco’s (In)Visible Class War: What you can learn by talking to homeless folks.” In it, dana tells of taking a shocked colleague who was talking like some of our students to go talk with a group of homeless people on San Francisco’s infamous 6th Street.
“I wish that more people working in the tech sector would take a moment to talk to these men and women. Listening to their stories is humbling. Vets who fought for our country, under the banner of ‘freedom,’ only to be cognitively imprisoned by addiction and mental illness. Abused runaways trying to find someone who will treat them with respect. People who were working hard and getting by until an accident struck and they lost their job and ended up in medical debt. Immigrants who came looking for the American Dream only to find themselves trapped. These aren’t no-good lazy leeches. They’re people. People whose lives have been a hell of a lot harder than most of us can even fathom. People who struggle on a daily basis to find food and shelter. People who we’ve systematically disenfranchised and failed to support. People who the bulk of tech workers ignore, shun, resent, and demonize.”
“14. Do you feel a sense of disgust or detest the way they smell, look, sound or behave?
15. Do you have any personal experience of homelessness?
16. Could you handle being homeless day after day and keep things together?
17. Would you smell better, behave better or beg less, than a homeless person does, if you did not have a home to go to for the next four weeks?”
The list is powerful. And I found that it was important that I read through it again myself, as well as again read through the other articles I reference above. Yes, I have had the personal experience of homelessness. Yet, to my dismay, my attitude towards Austin’s homeless was not far from that expressed by some of our students. How embarrassing… How sad…

Today is Christmas. A year ago, as I reported in this blog:
“...I ate my Christmas meal at the St. Vincent de Paul Society dining room where free meals are served to those in need. … I used to eat there almost daily when I was living on the street… Now I go to remember that experience and to once again rid myself of fears and misconceptions that build over time in this society when living mostly removed from that way of life.”
Today, I went back. Today, I badly needed to go back.

Sunday, October 11, 2015

The loss — and regeneration — of self

As I’ve documented in this blog, my life went to hell back in 2009. I almost lost everything, and that included, as a recent blog post by Carolyn Thomas addressed, my sense of self. Carolyn refers to this type of loss as a form of suffering “that is often dismissed by health care providers.” She quotes Dr. Kathy Charmaz:
““chronically ill persons…observe their former self-images crumbling away without the simultaneous development of equally valued new ones. … The experiences and meanings upon which these ill persons had built former positive self-images are no longer available to them.”
Carolyn and Kathy describe the impact of this at the various stages of being a patient. Take, for example, pre-diagnosis:
“Physicians can discredit our own definitions of self when we’re seeking help for early troubling symptoms (e.g., when we try to convince a dismissive doctor: ‘I know my body, and something is just not right!’) Dr. Charmaz warns that physicians sometimes treat undiagnosed persons ‘as neurotics whose symptoms are either nonexistent or psychosomatic in origin, leaving the patients feeling unsupported…’”
This matches my experience.

Carolyn and Kathy make a distinction:
“On one hand, you have those who are still living with the debilitating daily reality of chronic illness. These are not the same at all as those who at one time in the past may have had an episode of serious illness — but then got better. ‘For (the latter group), such periods of serious illness became the foundation for re-evaluation and change of self. These individuals (speak) of earlier crises as periods of time when they were free from the ordinary bonds of routine existence. That freedom heightened their consciousness of who they were and who they wished to become. For these people, illness became a tool of self-discovery and a fundamental source of later self-development.’”
My illness provided time during which I re-evaluated who I was and wanted to be. Emerging from that time was a commitment to telling the story of my unnecessary healthcare nightmare and to find other ways via which I could help to bring about badly needed healthcare system change.

The amazing Medicine X conference — with its roots in Medicine 2.0’11 — strengthened that commitment, as I was designated a ePatient scholar by the conference for 3 years. My sense of self was newly formed. I had a new mission in life.

But a large part of my working to achieve that mission overlapped with my previous life as I began to focus on talking and writing about ways experience design(ers) can maximize their impact on the healthcare system. Indeed, I’ve spoken about such things at experience design events (e.g., EPIC 2012 & Healthcare Experience Design 2013), and I’ve written about such things in blog posts and magazine articles (e.g., for UX magazine & interactions magazine).

And I began to work again in my field, with, particularly via my teaching at the Academy of Art University and General Assembly, a focus on experience design in any industry, not just healthcare. So that new sense of self began to be pushed aside by a sense of self much like that which I had before I became ill.

I’m still involved with Medicine X. I was there at the most recent conference in Stanford last month, where I helped moderate a day-long session on applying neuroscience concepts to healthcare design. I program a series of events year round under the title of the San Francisco Bay Area chapter of Medicine X. I’m even planning a Medicine X pop-up event in Austin for next month. But am I doing as much as I had hoped to do?

In my previous blog post of last December, I bemoaned the fact that I had stopped telling the story of my healthcare nightmare. Should I actually still be telling that story?

This week, I start teaching another 10-week UX design immersive course for General Assembly. I also find myself (with 3 others) confronted by the chore of reading and evaluating over 100 UX-related case studies which have been submitted for consideration for presentation at the CHI 2016 conference. Healthcare is not the (direct) focus of most of all this.

What sense of self will win out or emerge going forward?

Friday, December 26, 2014

I’m still here…

Wow — it has been a long time since I wrote something for this blog. Ouch…

My primary excuse is that I’ve been swamped teaching User Experience Design for General Assembly, something I began to do at about the same time as my most recent post in April. Most of that teaching has been of the immersive course, a 10 week, 5 days/week, 8+ hours/day intense adventure. I’ve written about teaching the fall cohort in “Disrupting the UX design education space.” It is hard to do much else when teaching that course.

However, I have done a few other things, including starting and running the San Francisco Bay Area chapter of Medicine X. I’ve written about that elsewhere; I probably should have included that post in this blog as well.

Attendees of events of that chapter have had the opportunity to hear the stories (and analyses and calls to action) of others. But during the Medicine X conference in September, I recommitted to telling my story, largely because of a talk given there by Marie Ennis-O’Connor (@JBBC). Here are a few tweets from the conference that reveal what prompted my recommittal:








Oof… Had I begun to worry about how I would be judged?

I’ve just completed reading “Lean In: Women, Work, and the Will to Lead.” In it, Sheryl Sandberg talks about when she struggled with the concern of how she would be judged if she were to continue talking about gender bias and about the time when she learned that she “should keep speaking up and encouraging others to do the same. It is essential to breaking the logjam. Talking can transform minds, which can transform behaviors, which can transform institutions.”

During the Medicine X conference, I tweeted:


But just when was I to find time to share more of my story or my story more? In my teaching and other writing, I do include short references to my story and relevant analyses and calls to action for user experience designers working in healthcare, but…

Yesterday, I ate my Christmas meal at the St. Vincent de Paul Society dining room where free meals are served to those in need. I go there for lunch once or twice a year, usually on a holiday. I used to eat there almost daily when I was living on the street, an experience I’ve documented in this blog twice (here and here) and elsewhere. Now I go to remember that experience and to once again rid myself of fears and misconceptions that build over time in this society when living mostly removed from that way of life. And this all reminds me of how my contributing to addressing homelessness was once very important to me as well — see, for example, “Reflections on gratitude.”

How the hell am I supposed to do all that I want to do and be effective at any of it? Obviously, I can’t, but I still care. I’m still making a contribution to addressing the ills of the healthcare system (see above). I’m not doing all that I wish I was, but I’m trying. And I’ll continue to do so.

I’m still here.

Wednesday, April 30, 2014

Still angry after all these years

I got to share a part of my story earlier this month when I spoke to students of a Design for Health course offered by the Stanford University School of Medicine. The focus of the particular class at which I spoke was design with empathy, and I shared the stage with IDEO’s Annie Valdes. My presentation was constrained by the rules of Pecha Kucha (i.e., 20 slides shown for 20 seconds each), but I also moderated the Q&A.


As you’ll see and hear, much of my talk referenced what I did subsequent to the main part of my health(care) nightmare. I described some of what I’ve done to have an impact on the needed redesign of the healthcare system and the patient experience; developing empathy is a significant part of that story.


Here is the video. A few of my initial words didn’t quite make it onto the recording. :-(



(Coincidentally, Annie’s talk on design research was akin to one I gave 5 days earlier to my user experience design students at General Assembly.)


Tip of the hat to Paul Simon whose song title I modified for the title of my short talk. (Yes — I’m still angry after all these years. But…)

Tuesday, February 18, 2014

Not giving up, and giving forward

My most recent post in this blog was about a powerful book -- Brain on Fire: My Month of Madness -- detailing Susannah Cahalan's long quest to overcome multiple, terrible misidiagnoses by healthcare professionals. Since that post, I've read two more books of relevance to this: one very similar, one (seemingly) very different.

In the very similar book -- Brain Wreck: A patient's unrelenting journey to save her mind and restore her spirit, Becky Dennis describes her 27 month journey through multiple misdiagnoses. Hers was yet another case where a diagnosis of mental problems came early. However, as Becky correctly asserted, "It's all in my head, but I'm not crazy."

As with Susannah's experience, so much of Becky's experience of her illness and the healthcare system was similar to mine. In Brain Wreck, Becky does a particularly good job at revealing her private thoughts along her journey. Some that particularly resonated with my thoughts along my journey:

  - her reaction of shock and disbelief to the initial diagnosis -- "dumbfounded," and its ramifications: 
      o "the embarrassment and shame associated with each time the doctors told me 'it's all in your head.' Since then, I approached doctors cautiously, afraid they would dismiss me."
      o "I refused to go back to the hospital, in fear of being treated like a mental case." 

  - "My neurological challenges made me think life was ending ... and quickly."

  - her frustration and worry: 
      o "I'm tired of wondering what's wrong with me. Wondering if I'll ever get answers that make sense."
      o "I felt failed by the medical system. ... Scared to discuss the neurological phenomenon much further. I don't think anyone believes me anymore."

  - "I just want to be me again."

  - months later: 
      o "It shouldn't have been this way. It shouldn't have been such a struggle."
      o "Scares me that it could happen again. I live in fear that if it happens again, it will be with greater intensity or consequence."

  - on meeting others who had similar experiences: "Oh my gosh. I've met my new family. These people totally get me. The experience of meeting other survivors is healing. Motivating. Less isolating."

The final chapter of the book includes an exploration of why doctors misdiagnosed her for so long. She explains that unless doctors have seen her disease in practice, the text book detailing it is long forgotten, too rare to be on their radars. Also, many patients are misdiagnosed, because the symptoms can be attributed to another diagnosis; doctors stop searching for a diagnosis when they find something that seemingly fits. Or as she stated earlier in the book: "(the doctor) treated me like a head case when he couldn't figure it out."

The final chapter also includes "20 Lessons I Learned the Hard Way." Here is a subset: 
"1. Trust your gut: You're the only one who knows how you really feel. Even if you can't put a finger on it. Honor yourself by listening to what your body tells you. 
2. Be your own advocate: You are the only one managing your healthcare. Even when you run across the medical professionals who have a strong interest in helping you find answers, it's still up to you to take the next steps or to seek additional answers until one fits. You are not their responsibility. You are your responsibility. 
4. No one knows everything - not even doctors
6. Join an online support group: I can't emphasize enough the healing aspect of interacting with others with similar health issues as you. 
9. Track symptoms
11. Prepare questions in advance: Organize questions in order of importance. Tick them off the list as you and your doctor talk through your condition. Don't be afraid to speak up if they aren't all answered. 
14. Learn to say 'no'
15. Take notes: It's your medical appointment. You are paying for it. And you deserve the benefit of notes to refer to later to better absorb the information once your emotional distress has declined."
See her blog post, "Patients ... Advocate for Yourself" for a related list.

---
Scott Adams, creator of the Dilbert comic strip, wrote a very different book entitled, "How to Fail at Almost Everything and Still Win Big: Kind of the Story of My Life." I acquired a copy of this book unexpectedly and wasn't sure I'd read it, but I'm glad I did. I most definitely didn't expect to find a story therein of relevance to this blog.

Embedded in the book is the gripping story of Scott's 3+ year inability to speak aloud to other people. No doctor was able to help him, and he, like Becky, suffered through multiple misdiagnoses, the first (again) of which was that he had mental problems. Scott refused to give up.

What was he to do? "...how could I find a name for a condition that was unfamiliar to two ear-nose-throat doctors, two voice specialists, a psychologist, a neurologist, and my general practitioner? There was only one creature smarter than all of those doctors put together: the Internet."

Scott used the Internet and succeeded in identifying his condition, which enabled him to find a doctor who knew the condition. He made an appointment.
"Within ten seconds of opening my mouth in her office, the doctor confirmed the diagnosis. I had a classic case. 
'What's the cure?' I whispered. 
'There is none' she replied. 
But that isn't what I heard. The optimist in me translated the gloomy news as 'Scott, you will be the first person in the world to be cured of spasmodic dysphonia.' And I decided that after I cured myself, somehow, some way, I would spread the word to others. I wouldn't be satisfied simply escaping from my prison of silence; I was planning to escape, free the other inmates, shoot the warden, and burn down the prison. 
Sometimes I get that way."
(An increasing number of patients with poor experiences of the healthcare system seem to get that way.)

And cured he became, and spread the word he has.

Tuesday, December 24, 2013

How many other people continue to be similarly misdiagnosed?

As many are discovering, it is wonderful to connect with people who had or are having similar (nightmare) health(care) experiences. Dolly Parikh recently informed me of another such person who had experiences similar to mine: "Your blog and story has provided a lot of encouragement and tips for her and she looks up to you like a celebrity and her hero."

"Celebrity" and "hero" are labels I would apply to yet another person who had experiences similar to mine: Susannah Cahalan. In the book, Brain on Fire: My Month of Madness, Susannah details the struggles she had with a U.S. healthcare system that misdiagnosed her illness several times, including wanting to lock her up in a mental facility as a schizo-affective. Fortunately, Susannah's family and boyfriend fought what they considered to be misdiagnoses, and she was eventually correctly diagnosed with a rare autoimmune disease that attacked her brain.

Susannah was lucky. "Right time, right place." But, "we live in a time when the rate of misdiagnoses in the United States has shown no improvement since the 1930s." The first neurologist she saw...
"...considered one of the best neurologists in the country, had never heard of (the disease I had). ... While he may be an excellent doctor in many respects, (he) is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It's a bad system. (He) is not the exception to the rule. He is the rule.
I'm the one who is an exception. I'm the one who is lucky. I did not slip through a system that is designed to miss cases just like my own -- cases that require time and patience and individualized attention. Sure, when I talked to him, I was shocked that he knew nothing about the disease, but that wasn't the really shocking part: I realize now that my survival, my recovery -- my ability to write this book -- is the shocking part."
I did slip through the system designed to miss cases like my own, so my survival, my recovery is perhaps even more shocking. Many don't make it. As Susannah states, "If it took so long for one of the best hospitals in the world to (diagnose my illness correctly), how many other people (are) going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?"

Reading Susannah's book was an emotional experience for me. So much of her experience of her illness and the healthcare system was similar to mine. Susannah writes, "I believe this book has lent many people legitimacy to their suffering. I've given them a name for what ails them, and for others who still don't have a name, I've given them hope."

If your experiences have also been similar to mine, read Susannah's book, check out Susannah's website, and consider giving me a holler. Hang in there; there is hope.

_____
(Thanks to Katie McCurdy for recognizing the similarities between my experiences and those of Susannah, and for sending her copy of the book to me.)