Streams

Open Phones: Sharing and Over-Sharing About Illness

Wednesday, January 22, 2014

A conversation has broken out online about how much information is too much information when it comes to blogging and tweeting about illness. It started when op-ed writers at The New York Times and The Guardian criticized Lisa Bonchek Adams, who writes about her battle with breast cancer

We take calls from listeners who chose to share their story online. Amy said she initially started her blog "Boo Cancer You Suck" to easily update friends and family about her progress. But quickly, she found that "it was a really wonderful way to go through something so difficult" with a larger community. Other callers reiterated the role of using humor around such a difficult subject, though another caller said that her main goal was to use blogging as a way to release tension, anxiety, and PTSD.

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Comments [36]

Dara B from Brooklyn, NY

When I was diagnosed with cancer a few months ago at 38, people started freaking out and all my friends and family were hanging out in this deep dark space. That was the hardest part. My vlog cancercanbecool.tumblr.com was my way of saying… hey everyone, there are some amazingly cool things that cancer can bring about. Having a bit of fun with it, talking honestly about my process and including my community during the journey has not only kept me in a very positive space, but it seems to be giving the people who love me a pathway to get out from under the dark clouds.

Jan. 23 2014 04:49 PM
sarah from Israel

I, too, write a blog about going through illness. Not cancer, though. I'm pretty sure there are no other blogs on the net about my topic: surviving Necrotizing Fasciitis, colloquially known as "the flesh eating bacteria". I almost died from that in 2007. I was in a coma, had many, many surgeries, all the while having 4 small children at home. In the aftermath of the NF, I suffered from an almost deadly bout of PTSD, and had to be hospitalized in a psychiatric hospital. Before that horrible year ended, I was in incredible pain. After a biopsy taken from deep inside my hip joint, a diagnosis which was to be the second extremely rare disease in one year, is one that effects certain joints. It is a tumor disease. Not cancer, because it doesn't spread out of the joint, but it will continue spreading throughout joint until the joint is destroyed, if the tumors are not surgically removed. That disease is called Pigmented vilonodular synovitis (PVNS). More surgeries.
And the fallout continued on, and continues to this day. My blog is 6 years old, and well over 1,200 pages. There is controversy about it among my brothers, they are embarrassed about me, that I "put it all out there". My parents often get upset when reading the posts, but I just HAVE to write. I need this blog. I need to know that my readers can understand, at least intellectually, what is going on with me. It's not easy to explain, but it is a lifeline for me.

It can be found at "www.lifeafternf.blogspot.com."

I am also in the process of writing my book, based on the blog, but will be mostly original material.
Thank you for this show. I'd have called in if I knew about it. I live in Israel, where the time zone is 7 hours ahead of EST. Thanks for inviting others to leave messages. I hope mine didn't get too long. Now you see why I need a blog. ;-)

Jan. 23 2014 04:25 PM
Dara B from Brooklyn, NY

When I was diagnosed with cancer a few months ago at 38, people started freaking out and all my friends and family were hanging out in this deep dark space. That was the hardest part. My vlog cancercanbecool.tumblr.com was my way of saying… hey everyone, there are some amazingly cool things that cancer can bring about. Having a bit of fun with it, talking honestly about my process and including my community during the journey has not only kept me in a very positive space, but it seems to be giving the people who love me a pathway to get out from under the dark clouds.

Jan. 23 2014 02:49 PM
mike kim war vet from Manhattan

I have a libk to the vet who called. So tbe vet who called journeyed 12 years with his dying mother; his mother had cancer. So, he values the bloggers and wishes his mom was able to have a voice in her imposed treatments and hospital settings. From this experience the caller after the Iraq War experience circulated his voice via social media. It has not been easy because many get caught up with the spectacle of illness and trauma including the afflicted. The importance of sharing narrative rests in preventing hegemonic systems from crowding the voice of the patient. If you are interested in contacting myself or the caller, email at hipsterwarrior@yahoo.com

Jan. 23 2014 12:20 PM
mollie from Catskill

Thank you for doing this segment Brian. I spent several hours last night reading Ameena Meer's blog as I am particularly intetested in alternative therapies for cancer. She is opening up a very important conversation. We are all affected by this dreaded disease and we need to stop and ask ourselves why it is so pervasive. Americans are only starting to become comfortable with so-called alternative therapies for a host of other ailments. But when it comes to cancer, the subject is taboo. Have Ameena on as a guest! Her writing is incredible.

Jan. 23 2014 11:21 AM
Courtney Duva

Hi all, I am the girlfriend of the speaker Phillip at 25:00
I just wanted to share my POTS blog with everyone here at www.potsproblems.tumblr.com
<3

Jan. 22 2014 03:45 PM
Wayne Johnson Ph.D. from Bk

I really liked the point of sharing health issues for your own sake and that of others. If any of the listeners have Prostate Cancer there is a very good monthly group for men and their families. You can check out the details at "Us Too, New York".

Jan. 22 2014 02:53 PM
Amy Gurowitz from Montclair, NJ

I've had Multiple Sclerosis since 1988. Before the Internet and before there were any treatments for MS. It was a very scary time- not knowing what my abilities would be the next week, month or year. In 2007 I started blogging about my experience and learned quickly that writing about my life with MS was not only healing to me, but it helped others living with this scary unpredictable disease- which in turn- helped me! (knowing I was helping others with my often scary experience) A beautiful circle! My blog: mslol.me (MSLOL: Multiple Sclerosis a Life of Learning and of course laughing out loud!) is more a group of essays than diary posts.

Just as your guests said- It's scary to learn about a disease you have and its so hard to explain it to everyone in your life. (my neck is sore from nodding along with each caller!) :)

In 2008 I founded a non-profit org that helps with those exact issues. The information spreading/fundraising site is at: www.mssoftserve.org Once produced, the site will be dedicated to helping people with chronic illness learn about his/her unique version of the disease without all of the scary possibilities. It will also help her/him teach the people who care about them. (and vice versa!) Without the need to lather, rinse, repeat! ;)

Thanks for doing this show Brian- It's always great listening to others who have the same experience with chronic illness.

Jan. 22 2014 12:01 PM
Julie Goodale from Rockland County

Thanks for this show, Brian. I was diagnosed with breast cancer in 2001 - long before ubiquitous online social media. I was just in my mid-30s. At the time, I made a choice to be completely open and public about my disease in part because I wanted to educate people - this isn't just our aunties' or our mothers' disease. Several years ago I started blogging about fitness for cancer survivors as well as survivorship issues. My latest post is about the Kellers, http://fitnessforsurvivors.blogspot.com/2014/01/rage-rage-against-dying-of-light.html.

There is a vibrant online community of people seeking support, and sharing experience and information. Many, like me, have stayed involved long after treatment is finished as a part of ongoing advocacy. It's true that there can be a downside to living some of our most painful, vulnerable moments in public. But the benefits include support, wider understanding of illness, educating friends/family/public, and potentially improving conditions and treatments for others.

Most importantly, our choices about what and how we share information, like our choices of how we fight our diseases, are our personal choices.

Jan. 22 2014 11:47 AM
ameena meer from Tribeca, NYC

i blogged all through my cancer treatment, both at memorial sloan kettering and afterwards, but mostly to get the word out about alternative cancer care and cures.

when i left msk, i was told i would be dead in 12 weeks. four years' later, the cancer disappeared, the scars healed and i am stronger and healthier than most people my age.

http://amazonsofnyc.blogspot.com/2012/01/why-c-word.html

i am also a single mother of three teenaged girls and i run my own business and have no health insurance. it IS possible to do this - and that's why i blog about it.

Jan. 22 2014 11:47 AM
E Fitz Smith from Connecticut

I have communicated with a group of people online via blogs and Facebook groups for the past five years concerning a rare cancer of the adrenal gland tissue - Pheochromocytoma/Paraganglioma.

They have been a lifeline and a community that has helped me discover how to be properly diagnosed for this particular condition that can become a deadly cancer... which I have discovered that I DO NOT have.

But I could not have discovered this fact if I did not have their expertise, which they shared online, to read, draw from and act on.

An I, in turn, can be a support and friend to them in their illnesses.

'Blogging' - which I think now really means Social Media Interactions: Facebook, Twitter, and blogs - is an excellent tool for researching and investigating symptoms and treatments when you dive deep into a group of people sharing the details of specific illnesses (cancer in this case) and treatments (from clinical trials to correct interpretations of test results).

The line from the sick bed to the right doctors and specialists is shortened by help from people who have walked the path that you may suspect you need to walk.

Or you realize it is actually not the path you need to take, it is another diagnosis you need to pursue. And Social Media friends can help you with those questions too.

Jan. 22 2014 11:47 AM
cancerisSOFUNNY from NM

you can look inside my book of drawings and cartoons about how I feel about my cancer , here:
http://www.amazon.com/Cancer-Is-Funny-Amy-Marash/dp/0557961386

Jan. 22 2014 11:45 AM
cancerIsSOFUNNY from New Mexico

I blog here about my experience of colon cancer. I draw cartoons and post them to express and share my emotions. Many people appreciate what I share. Nobody has to look!
wwww.cancerissofunny.com

Jan. 22 2014 11:36 AM
ameena meer from Tribeca, NYC

i blogged all through my cancer treatment, both at memorial sloan kettering and afterwards, but mostly to get the word out about alternative cancer care and cures.

when i left msk, i was told i would be dead in 12 weeks. four years' later, the cancer disappeared, the scars healed and i am stronger and healthier than most people my age.

http://amazonsofnyc.blogspot.com/2012/01/why-c-word.html

i am also a single mother of three teenaged girls and i run my own business and have no health insurance. it IS possible to do this - and that's why i blog about it.

Jan. 22 2014 11:33 AM
Sarah from CT

As the parent of a kid with a chronic medical condition I spend a lot of time interacting online with other parents in the same boat. Our talk is supportive, informative and intended to improve our collective disease management. It's interesting and valuable to us because it directly concerns our lives and our children's health. But why in the world would I expect anyone not living with this disease to want to read what we write? I'm of the opinion that blogging about your health is deathly boring to anyone not facing the same health issue. Even listening to these bloggers talk about their blogs is dull.

Jan. 22 2014 11:28 AM
Wendy W from Central NJ

I appreciate what the caller said about keeping the larger circle of friends and family up-to-date. My former brother-in-law was posting on Facebook about his cancer and we really appreciated it. I don't have a direct connection to him, but I do love him and he is the father of my beloved nieces and nephew, so I wanted to know what was going on. And, I didn't want to harass his kids who wanted to spend their time caring for him.

Jan. 22 2014 11:27 AM
Rocky from NYC

Does anyone remember the radio/tv features on a man who chronicled his descent into the pit of Alzheimer's? A friend has just been diagnosed and I thought reading this man's story might be helpful. But I can't remember his name and can't find it using Google.

Jan. 22 2014 11:27 AM
RJ from prospect hts

Can this be broadened out beyond cancer? One of the problems in general with how our social and political culture deals with health is balkanized into "special interests." There are so many illnesses--I'm sure others with different diseases also blog--and the research organizations are all competing for funding, and illnesses are rated by the number of people afflicted (they don't try to account for "collateral damage" on families, do they?) as ways of justifying a focus on one or another. We need funding for basic research and a moratorium on "disease of the week" press coverage and so-called public debate and events.

I would love to see a Website that hosts all of these blogs--because they do give people a place to feel less alone with their experiences--and similarly a coming together in one entity of the individual disease groups that agitate together for basic as well as targeted disease funding.

Jan. 22 2014 11:25 AM
Kevin H from Brooklyn NY

Good morning! My wife has had her breast CA relapse this past year. She has chosen to be very private about her ordeal, and its hard for both of us to be so isolated. She has gotten very upset with me when I tell our closer neighbors too much detail about how she is doing. I have to respect her wishes but part of me feels like our friends deserve to know some of whats going on. CA is mostly about the patient, OFCOURSE!! but CA also affects the patients family and friends. Shouldn't we be allowed to know/share how my wife is doing, so we can express our human-ness, our caring part of ourselves? Atleast during the most stressful part of life, the process of dying/surviving an illness?

Thank you,
Kev

Jan. 22 2014 11:23 AM
Nick from UWS

Repulsive exhibitionism and narcissism, nothing more.

Jan. 22 2014 11:23 AM
Karen C

Having a chronic disease reading other peoples blogs, tweets etc has become way too overwhelming. At one point I erased all bookmarks relating to my disease. It seems to me posting on social media is more therapeutic for the poster than for the person reading it. Being informed is one thing but constantly wondering where you, the diseased stand in the world of the disease. A chronic disease has a whole set of different issues than coping with an illness that has an end - either you're cured or not - with chronicity one has to face the reality that your disease will not be cured and you will live every day saddled with all the symptoms, pain, depression and uncertainty of what lies ahead. I have to live with this pain for the rest of my life? What kind of life is that? Unsettling questions that have no answer.

Jan. 22 2014 11:23 AM
John A

I read people's blogs on their mental illnesses. Tough stuff, and I have to take breaks about half the time. Way too many threats of suicide posted on tumblr. Most of it was intended to be female-to-female only communication, I Guess.

Jan. 22 2014 11:22 AM

"Do you think it helps you heal?"
Aside from this being a softball question you know the answer to, what business does an intelligent, otherwise astute radio interviewer have posing this anti-intellectual nonsense? Of course there is no scientific evidence whatsoever that prayer, positive attitude or support system has anything to do with medical healing. An acceptable question would have been "How do you think this process makes you feel better about your affliction?

Jan. 22 2014 11:22 AM
MichaelB from Morningside Heights

Why is the discussion narrowly about cancer as if it is a separate category? Whatever is said could be said about any debilitating or life-threatening illness or even accidents.

What the previous caller said about looking at others she sees in the subway differently than before her cancer diagnosis and treatment -- this is empathy, and we should be in that place every day about any serious misfortune that may visit any one of us.

Isn't that what "There but for the Grace of God go I" means?

Jan. 22 2014 11:22 AM
emily helck from jersey city

I was diagnosed with breast cancer in my 20s, and social media has been instrumental for me in getting through treatment. I blog about what's happening, and have a strong online support group. For most of my time in cancerland, my readers and followers have been limited to people I know in real life.

Then I put a time lapse video of my year of treatment on youtube, and it went a little viral. At first it made me very nervous -- what was I opening myself up to? But the response has been overwhelmingly positive. People have told me that the video made them less scared about starting chemo, or had started a conversation with a sick relative, or inspired a patient to make her own creative project.

I think being open about these types of experiences is so important. It's not for everyone, of course. But so much of the power cancer has is because of fear. And the cure for that, I think, is knowledge.

Here's a link to the video: http://www.youtube.com/watch?v=3axx9mMQgLU

Jan. 22 2014 11:21 AM
John from Brooklyn

I think most people become uncomfortable when others FB their illnesses... A blog may be different, but FBing seems a bit much. I think it's a symptom of our "air everything" culture and is unfortunate as serious illness is very personal.

Jan. 22 2014 11:19 AM
Mark from The Bronx

I survived lymphoma 12 years ago, then went to med school. I told my story as an "About me" in my facebook profile, and my ex-wife unfriended me.
As a doc, I wouldn't share the details of my bone marrow biopsy, like the boo blogger, because the procedure redefined "pain" for me. I don't want people to be afraid of getting a bone marrow biopsy, if they need one.

Jan. 22 2014 11:18 AM
Nancy from Brooklyn

I am so glad to see that Cancer is no longer a whispered topic. I am a mother of 3 young children and was diagnosed a year and a half ago. After discussing with my family I learned there was a history of breast cancer in my family but that information was almost lost to us because women did not discuss this. It was considered womens issues not suitable for polite discussion. I need to talk about it as a way to process and unpack the levels of grief, shock, fear that continues to come in waves.

Jan. 22 2014 11:15 AM
blossom from Brooklyn, NY

I was diagnosed with MS about 5 years ago. Early on I joined the MS page on the site 'Patients Like Me', where other people with MS could share their experiences with symptoms, meds, etc. However, I quickly left the site because I was frustrated with the minute detail with which people tracked their daily symptoms. Although my MS is a chronic condition that shapes many choices that I make on a daily basis, I don't let it define me. I prefer to live my life as a healthy person - with some limitations- and feel that blogging about it would just give it too big of a role in my life.

Jan. 22 2014 11:15 AM
Robert from NYC

Well I can tell you that anal cancer is a pain in the ass! How's that? Is that funny enough? I thought it was. But that's about the end of it. I soon found out I wasn't unique and wasn't the first to say that. I thus am not special. So cancer taught me that I am not special and possibly boring. Oh well, here I am, boring ol' me. The End.

Jan. 22 2014 11:15 AM
Amy from Manhattan

Seriously? If it bothers you that someone is blogging about their illness, *don't read their blog*! Or at least skip the post about the illness. Some people (not in the public eye) lock posts about things they want to keep private, so only people on their friendslist can read them.

On what's funny about cancer, there's actually something called "tumor humor." It's an outlet for the stress of having cancer & helps patients deal w/the illness.

Jan. 22 2014 11:13 AM
genejoke from Brooklyn

I would hope that anyone dealing with cancer or any other serious illness would share their experiences via blog or any other easily accessible format. It can be a heartbreaking read but also helpful to readers navigating similar illnesses who seek advice or affirmation.

Jan. 22 2014 11:06 AM
inwoodite from New York

I don't have any major illnesses, but I often google certain conditions or symptoms and am always happy when I find someone has discussed without embarrassment a problem I'm doing research on. It's very helpful. And I know menopause isn't an illness, but it's something a lot of women are unwilling to talk about, including myself, and it seems doctors can't be bothered with unless they think they can make money selling you HRT, so it's very helpful to hear what other women are going through, how they cope, and hear what remedies work for them. The internet makes them able to share their experiences with only those women who really want to know.

Jan. 22 2014 10:39 AM
Estelle from Brooklyn

Several years ago, I had a knee replacement. I found someone's blog chronicling his experience with a knee replacement. I bookmarked that blog and went back to it periodically for reassurance and encouragement.

Jan. 22 2014 10:14 AM
frp from Bronx

I would not discuss any illness in print nor in person,except to my partner and one dear friend. In March, I must have surgery and no one will know about it.

Jan. 22 2014 10:07 AM
Joanne Edelmann from East Village, NYC

I underwent scoliosis surgery in January 2012. As a former modern dancer and current teacher of Movement Techniques for Actors the thought of major spine surgery was daunting. My blog, which chronicles the weeks before the surgery is "Scoliosis Dancer" on joanneedelmannsnewyorkstories.blogspot.com. The blog stops shortly after the surgery, as I needed to focus on getting back to my life as teacher and writer. It took two years to be able to write again after the surgery. I am continuing the editing process on my novel, which is based on being a squatter in the 80's and early 90's on the Lower East Side. Two of my stories were included in RESISTANCE A RADICAL SOCIAL AND POLITICAL HISTORY OF THE LOWER EAST SIDE, edited by Clayton Patterson. Review of those stories: "Joanne Edelmann’s stories of her life in a squat on East 7th Street are a bizarre blend of normal domestic life and episodes of high drama involving machetes."

Jan. 22 2014 09:34 AM

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