One of my favorite online features is called “Patient Voices,” which features real stories from patients coping with everything from attention deficit disorder to pancreatic cancer.
No matter what the topic, “Patient Voices” always generates a lot of discussion on the blog. For the Best of Well podcast this week, I spoke with Web producer Karen Barrow, who created the “Patient Voices” feature for The Times. I asked her how she finds patients to share their stories, and what she has learned from the many people she has spoken with in the course of creating “Patient Voices.”
“You do an interview and think they have a run-of-the-mill story, but you always find there is something special there,” Ms. Barrow said. “I think the bottom line from a lot of these patients is that when you get a serious diagnosis, you can crawl up into a corner in a ball and fade away or you can stand up and face it head on.”
To listen to the rest of our conversation, click on the podcast link below. And click here to read all of the “Patient Voices” created so far.
Listen to the Podcast (mp3)
Healthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at 
The easiest and most pleasurable way to eat well is to cook. Recipes for Health offers recipes with an eye towards empowering you to cook healthy meals every day. 
24 Comments
Is it correct that you don’t have any “Voices of Diabetes”?
This is a real gap considering that 21million Americans are living with it.
Also, November is National Diabetes Awareness month, so I’m sure the NY Times will want to help shed light on this devastating illness.
FROM TPP — This series has just begun and there are many many important health topics that have not yet been addressed in the Patient Voices series. But they will be. thanks for your comments.
— AmyT of www.diabetesmine.comI know it’s supposedly a rare disease but there are an awful lot of Cushing’s patients online.
Would you consider doing a Voices of Cushing’s Disease/Syndrome?
— MaryOCould we also using the Well intro:
“Healthy living doesn’t happen at the doctor’s office. The road to better health is paved with the small decisions we make every day. ”
consider the ‘Voices of People Who Took Little Steps For Health’ as a logical addition to the many other wonderful voices in the choir of wellness, health and illness?
— ed gI would love to see stories from patients with Lyme disease. It’s more widespread than many realize, often difficult to diagnose, and extremely devastating if not caught early.
Especially considering that individuals living in the northeast are more likely to be exposed to it than in many other areas, it would be an important topic for consideration.
The stories could open the eyes of so many and help them get the treatment they or their loved ones need - treatment that many don’t even know they need or know is available.
— martha kI’d like to be able to read transcripts of the interviews in Patients Voices. Listening is interesting, but I get more out of reading.
— MissyMisshttp://www.doctipster.com
a free way to see what your NY neighbors are saying about their doctors. Let other NY’ers know about your doctor and healthcare experience. (not-for-profit)
— robThere are several workouts focused people with high stress jobs dealing with a tough economy on http://www.holosfitness.com
— JonI’d like to see transcripts, too. I sometimes absorb more that way plus could print out and read at leisure.
— KarenI would like t hear about “voices” fromt he elderly. Our turn is coming… we are not adequately prepared to care for the avalanche of Americans who will be over 70 inthe next 2 decades.
— Lori CranwellTheir stories of being left behind in our healthcare system, nursing homes, medicare/medicaid-everything I see in my practice as a Geriatric NP. I think Ms Smith has struck a chord in each and every one of us!
I had a hemorrhage and an arteriovenous (AVM) rupture when I was 15, and had a craniotomy two months later at 16 to remove it. Although there’s a ton of ongoing research on AVMs, there’s still not much known. Apparently, they’re congenital but not hereditary. Prevalence is not linked to any gender, race, or age group. The disorder is rare, and rupture, even more so, but most people that do experience ruptures have stroke-like symptoms and die. All in all, they’re just so fascinating, and I’d love to read more about them.
— Boskey PatelI agree that transcripts would be nice (I always read the summary, but don’t listen because I’m at work!) I hear rumors there are a lot of people with hidradenitis suppurativa…but it’s one of those diseases you don’t want to talk about. Not exactly the best to bring up in a dating situation either. But I’m thinking diabetes and heart disease will beat hidradenitis because they’re a bit more prevalent in society.
— CI loved the eating disorder patient’s voices though. In college, I swear it’s about as prevalent as binge drinking, and these voices need to be heard…because half the time, your roommate won’t be eating and won’t believe you when you try to talk to them about it.
I am very interested in this article,”Patients Tell Their Stories”.because I think Patient Voices is very important
including the real informations of disease of patients.
It is very useful to treat the patients.
I have been diabetic for about 5 years, so if possible
I would like to read the stories of diabetic patients.
-keiichi kamekura
— keiichi kamekuraI’m so glad to read that someone is doing a project on patients’ voices. Too often, our medical system disenfranchises people of their own stories. We concentrate on the diagnosis, then place the person in a convenient health condition grouping. The individual story - what the experience of that illness means to that patient - is quite often lost.
Researchers have documented health improvements when people who have undergone traumatic experiences are able to process their stories in their own words. I believe an important function of a doctor should be to witness and acknowledge the experience of each individual patient.
Side note - TPP, I love reading this blog. You always find great subjects and then give them an interesting twist. Thanks very much!
— amyFROM TPP — And thank you for reading and taking the time to comment.
Kudos for including disorders with significant psychological components - Bipolar disorder and eating disorders - among the earliest of these features.
— LauraThis is a nice feature, literally a way to give patients a voice. Very similar to the project I founded called Carnival of MS Bloggers, found at http://carnivalofmsbloggers.blogspot.com/.
We have developed quite a community of patients living with multiple sclerosis who are sharing their stories and “voices” on a regular basis. From that comes a wonderful support system which provides access to real world information shared by real world people.
Thank you for providing such a great platform for others to share their stories as well.
— LisaI was bothered by Ms. Barrow’s comment that “I think the bottom line from a lot of these patients is that when you get a serious diagnosis, you can crawl up into a corner in a ball and fade away or you can stand up and face it head on.”
Folks might take a look at the current article by Dr. Friedman, “When All Else Fails, Blaming the Patient Comes Next.” The answer to serious health problems is not to glorify the John Wayne ethos. Maybe the way patients respond to receiving these diagnoses is a little more complicated than that.
FROM TPP — I think Karen was referring to the patients she has interviewed and learned from for the Patient Voices series..
— WilliamThanks for your response. I can accept that Ms. Barrow may have been passing along the views of some of the patients she interviewed. (Though it sounds a bit likes she thinks they are onto something valid.)
The bigger point, for me, is that how patients respond to serious medical problems is not as simple as the view being expressed. Dr. Friedman discusses the patient who told him he was depressed because he was a failure and a whiner. “Even my therapist agreed with me…She said that maybe I don’t want to get better.”
My guess is that it is easier to dismiss people if we perceive them as crawling up into a corner rather than standing tall and facing things head on. But consider that the person being dismissed (or judged) may be you, next time, or perhaps someone you love… We can aspire to do better than to respond in that way — both in terms of providing helpful treatment and in terms of understanding human emotional responses in a more generous way.
thanks again.
— WilliamFROM TPP — You may be interested in an earlier post from the blog called “Cancer Emotions: Upbeat, Stoic or Just Scared?” which I think captures some of the points you are making. Thanks for taking part in the discussion.
Chronic pain? How about that? And how about my spinal cord stimulator? There is a group of us at RaceAgainstthePain.com. I’m wired and vibrating!
I lost two toes and a lot more to an ignored foot infection after minor surgery. I begged for 8 months until an out of my network foot doctor sampled my foot to find a hideous bacterial infection eating the bones in my foot.
Good health care means insisting on getting treatment.
— Laurie C. in San DiegoAlong with Bev Johnson at the Institue for Family-Centered Care, I co-wrote “Privileged Presence: Personal Stories of Connections in Health Care”. The 50 stories from patients, family members and health care providers showcase the importance of full communication, mutual respect, collaboration, and compassion…and what the effects are if those qualities are absent.
It deeply impresses me how much we can improve the experience of health care overnight, for virutally no money, by simply adjusting our attitudes towards fully involving patients and families in their care…the experience of care improves for all, medical errors are averted, and health outcomes are improved.
— Liz CrockerI would be interesting in hearing voices of people living with systemic Lupus.
— JudyThis is very interesting. It is good to give voice to people suffering from things other than disorders which constantly get media attention. Cancer and heart disease have affected many in my family and they are obviously important. But so many other illnesses are out there and so many people are on a medical merry-go-round and they should not be ignored. I have had two major spine surgeries and spent the last 2 1/2 years going through various procedures both for management and diagnosis and no end in sight. But because there is no big name for what is wrong and no ribbon to wear (and I can hide my scar) people often think I am not really sick. It is good to hear from people with less obvious illnesses so that we know we are not alone.
— Mindy S.This week you have a “cases” story in health about how people who have had miscarriages are often not permitted to grieve or otherwise acknowledge the fact. I myself have never been pregnant (and hope never to be…) but two of my very close friends have suffered miscarriages, one of which was life-threatening.
There is “no ribbon to wear” for that, either, and I don’t know if you could get people to do a Patient Voices for it. But their grief (and the empathy I feel for them) is real.
— MDI contracted Lyme DIsease last spring. The infectious disease specialist at my hospital refused to treat me. He simply does not believe that Lyme Disease is real. My PCP gave me a Western Blot test which confirmed I was infected with tihe spirochete. Having caught it early, a one month coures of amoxicylin was ordered. It worked and i was fine. My PCP says he sees many cases and LYME is “endemic”.
— John MarshallThe ID specialist thinks Lyme Disease is a myth, and people who claim to have it are hypochondriacs. That guy is truly causing needless harm and future suffering. The lesson learned is take control of your own healthcare. Do not depend on doctors.
I have listened to your feature with interest and am left marveling at people’s ability to get up and get going after such difficult circumstances. The stories you have featured here are inspirational. Losing your health causes such terrible grief, people understandable aren’t always able to overcome it. Twenty five years ago, I was diagnosed with systemic lupus. The grief and sadness were so overwhelming I never thought I’d recover. And in the midst of my despair, I became desperately sick, left to wonder if I’d ever live another healthy day. Today, I truly live a wonderful life, in spite of my disease. It’s something I never thought would happen. Your feature is important because being sick can be a lonely journey. The more we hear other’s stories, the more we understand we are not alone and there are others like us. It gives us hope and help to keep moving forward in the face of illness.
Could you include a feature on systemic lupus in the future?
— Trisha Trivinia