Question for My Fellow Dialysis Bloggers

[Stacy Without An E]

I've been a writer off and on my entire life.  I rail against myself all the time because I'm not as consistent as I'd like to be.  I began my blog to help me deal with all the emotions, trauma, and anger I was feeling over my entire situation since my last kidney failed.

At first, it was anonymous (although my first name is in the title.)  I get along so well with the staff that eventually one or two of them asked to read it.  Then I included it in my signature here at IHD.

Those decisions may have been mistakes looking back with hindsight.  Because then within my small Dialysis community (about 225 patients) it spread like a virtual virus.  I've had positive and negative feedback to my writing, but this latest volley of responses were venemous, accusing me of everything from being a liar to the fact that I'm the most miserable person every created.

I'd llike to say it doesn't bother me, but it does seem to rattle me somewhat.  Its really a double edged sword because I want to tell the truth about my experiences, but political correctness from certain individuals dictates I should just shut the hell up and write glowingly about everything within the putrid walls of my cllinic.

I'd like to know you deal with this type of feedback.  And does it end up affecting your writing in the long run?

Thank you fellow IHDers.    Your opinion over the years has always been appreciated.

[jbeany]

I don't write pretty much any where but here about what I'm going thru, so I haven't had personal experience with blogging.  My personal opinion though, is that if they can't handle hearing that some clinics are stuck in a "drain their blood, their spirit and their bank account" groove, then they ought to start donating kidneys and donating cash to find a cure so no one has to tell them uncomfortable truths.

You're a good writer, Stacy.  Don't let them harass you into self-censoring what you want to say!

[Ladybag]

I actually started blogging before I found this website. You should say whatever is on your mind good or bad you are the one going through it and everyone has different experiences. To be honest most of the time I am saying how much I hate this on my blog because I don't want to bother my family with the same attitude. Blogs are your words no one elses.

[monrein]

Many people don't seem to understand that writing about emotions, feelings, reactions to things that affect us viscerally are seldom precise, accurate, factual or truthful in any absolute sense.  They are subjective, personal, often shape-shifting and to write about then differently would be dull in the extreme IMO.  This is so for both "negative" traumatic experiences as well as "positive", intensely joyful ones.  Personally, I have a hard time relating to mushy, sentimental, overblown descriptions of "love" but if that's what people need to write while under the influence of their hormones, fine, go ahead.  Our moods affect our perceptions and there's no right or wrong when it comes to the way we perceive things and the way these perceptions affect us.  You need to use your creative impulses to write about this very difficult material in any way you see fit I think.

I don't write a blog that anyone reads and when I do write it's usually to release some feelings rather than internalize them.   I think I'd struggle in the same way that you are currently because of the type of feedback you describe BUT Stacy, it's your blog, your experiences, your misery, your joy etc and if they're bothered they can stop reading.  Hell, it's not therapeutic, literary or even interesting if you need to censure yourself and as far as I'm aware no one's written you a huge advance cheque to say what they want to  hear.  You could suggest that someone start a "counter-blog", possibly titled "Pollyanna responds to Stacy Without An E". 
I bet they keep reading despite whatever "critiques" they send your way.

[Zach]

F**k them if they can't take a joke!
 

[Poppylicious]

I started my 'dialysis' blog because of natnat's research.  I decided to make it public purely because there may be other people in my situation (I come from the angle of being a wife to a dialysis patient) but I haven't gone out of my way to publicise it.  The only link to it is in my signature below ... even my Blokey doesn't read it, not because it's a secret but because he's never asked me for the link (he does know about it.) But I've always liked being a tad anonymous when it comes to blogging, which I've been doing for eight years now.  I have an 'I know you so you can't read this' blog, and an 'I know you and am letting you read this' blog (which is an edited version of the former!)  I would find it difficult letting people know about my blog because I'd feel that I couldn't write what I wanted.

I say stick with it and they can learn to stop reading it if it grates on them that much.  It's YOUR blog; YOUR opinions, thoughts, emotions.  Sod what they think. As monrein says, suggest they start a counter-blog. 

 

[okarol]

Stacy,
I love your frank, honest and humorous style. You are unique and bright and screw them if they can't take a joke (or criticism!)
I just recently started a blog but am careful because I am not just writing about my experience, but about Jenna too, and I am super protective of her feelings. I also am well aware that my words can be used against her, if it's about insurance issues or being evaluated for a transplant. So I constantly feel like I have to self-censor. (I have only written one blog entry and it took awhile!)
Keep on blogging! Don't read the comments (except mine LOL)

[MooseMom]

I love Monrein's response!

I have to admit that I had never read your blog until just now, and I find it utterly compelling.

I have been asked to write a blog, but I don't know if I could really do it because I am not sure how I would feel about the inevitable negative comments/responses.  I don't think it is possible to write ANYthing online that will not draw a negative comment from someone at some time.  It's the nature of the beast.

I am not sure that I would respond well to biting, vile criticism.  It would rattle me.  I would probably stop writing.  What I would not do is keep blogging but with a sanitizer at hand.  I'd rather not write at all than to be cowardly enough to keep writing only what I thought everyone wanted to hear.  I am very bad at finding a silver lining in ESRD or in the sinking of the Titanic or in war in Afghanistan or in the earthquake in Japan or in the bubonic plague; I'm just not wired that way and could not possibly change now.

It IS a doubled edged sword, but I have to say that if you have managed to live through the hell of dialysis for as long as you have, the occasional stupid-ass comment from some Pollyanna doesn't even rate on the Richter Scale.

I love your writing.  And everything you say is so bloody true...it is YOUR truth.

[okarol]

Stacy,
The negative comments are not posted on your blog?
Cowards I say!!

[woodsman]

F**k them if they can't take a joke!
 

x2
 

[Stacy Without An E]

Thanks to everyone who responded.  Karol, I got tired of the comment section turning into a flame board of anonymous comments, so I changed the ability to post.  Now, if anyone wants to comment (and no one usually does now) they have to show themselves.

[okarol]

Good, I was going to suggest it - they cannot hide as anonymous! 

[MooseMom]

Thanks to everyone who responded.  Karol, I got tired of the comment section turning into a flame board of anonymous comments, so I changed the ability to post.  Now, if anyone wants to comment (and no one usually does now) they have to show themselves.

What is it about the internet that makes people lose their minds?  Do people really think that posting anonymously gives them some sort of special power or privilege to just go ballistic?  I am constantly amazed by the truly, truly horrible way people treat each other online, cowardly hidden behind some sort of cute avatar. 

[Riki]

You can't let those negative people stop you from writing.  My blog is not specifically dialysis related, but most of what I write has something to do with dialysis or kidney disease.  Like you, I've written on and off most of my life.  It's something that I love to do, and when someone criticizes something that you love, it can be hard to take.

A few years ago, someone who really doesn't like me (to the point where if she had to say something nice about me, she'd probably choke on it) tried to use a story that I'd written to prove that I was crazy.  The story was totally fictitious, about meeting a favorite celebrity and becoming a family friend.  It hurt me deeply because it was a story that I had put a lot of work into.  It took four friends working as a team to convince me to not stop writing.

We writers have to grow a thick skin and learn to try not to take the negative to heart.  It's not easy, and I know I haven't mastered it yet.

I also don't think my blog gets near as much traffic as yours gets.. *G*

[Bill Peckham]

I've been reading your blog for a while - I always thought that it took a sort of sub conscious view of being on dialysis, a view that is often thought, rarely voiced.

I mean you describe people by their most obvious physical or olfactory characteristic, it's what I probably would also call them in my head but that's not the way we interact - I know from reading your blog that you don't interact that way in meat-space. We have our inner editor that is polite and bites our tongue and because we (I include myself) we put up with so much sh*t in meat-space I can see where writing your blog would be enjoyable.

But then people will read it and think - is he talking about me? So I can see where you'd get some feedback. So what to do ... I think you should keep writing, but the more people read what you write the more people will care what you write. Maybe modify the blog set up, I don't think Stacy without an E  has to be completely biographical. Maybe it would be liberating to say it is Any Unit, Anywhere, USA. I think there is a lot to be said about being you, having people in your day to day life read your writing but maybe call it a fictionalized account - inspired by real events.

[rsudock]

any online forum where you put yourself out there and people comment you begin to feel like you have to censor yourself...even on facebook sometimes I feel like I can't say what I want b/c people may get annoyed about my constant dialysis talk or political viewpoints but I forge ahead and say what I want.

[glitter]

I like your blog, I have always enjoyed reading it, and have often wished you wrote more often. I like it because its honest, your feelings are your own, and if someone doesn't like/agree/whatever, then too bad. The people that know you love you know matter what you write, the people that don't....don't.  ( I also think your satire is funny and would hate to see it end)

[MooseMom]

"meat-space"

Oh my.

I love that.

[okarol]

I've been reading your blog for a while - I always thought that it took a sort of sub conscious view of being on dialysis, a view that is often thought, rarely voiced.

I mean you describe people by their most obvious physical or olfactory characteristic, it's what I probably would also call them in my head but that's not the way we interact - I know from reading your blog that you don't interact that way in meat-space. We have our inner editor that is polite and bites our tongue and because we (I include myself) we put up with so much sh*t in meat-space I can see where writing your blog would be enjoyable.

But then people will read it and think - is he talking about me? So I can see where you'd get some feedback. So what to do ... I think you should keep writing, but the more people read what you write the more people will care what you write. Maybe modify the blog set up, I don't think Stacy without an E  has to be completely biographical. Maybe it would be liberating to say it is Any Unit, Anywhere, USA. I think there is a lot to be said about being you, having people in your day to day life read your writing but maybe call it a fictionalized account - inspired by real events.

Interesting. So then any patient or any tech in Anywhere might think, "Is he talking about ME???" hahahah 

[onestronglittlelady]

Wow, there sure are some silly people in the world. I have not read your blog, but I am going to find it and read it now! I may even learn how to start a blog myself.

I too had something like this happen. My mother-in-law contacted our local paper with our story, as my husband & I both had transplants long ago, and both started dialysis a few weeks apart the end of 2010. I was afraid of the backlash of our small town, but didn't want to upset my mother-in-law. The story ran, they wouldn't let us read it prior to the printing, and didn't tell us it would be on the front page. Sure enough there were people who left small minded comments about us not paying our bills. They hurt, but I know their opinions are formed by their beliefs and knowledge. Yes true some bills we haven't paid. But they don't know we lived in a camper all summer to try to pay our bills. And that until jobs were lost and health declined we did pay our bills on time.

My 2 cents, you have been given the gift of writing. It would be a shame to hide that gift in the closet or worse yet, throw it in the garbage.

Good luck and I can't wait to read you blogs

[FindingNeverland]

I don't have a blog but I do have a facebook page dedicated to my 'cause' so to speak and I have things posted like pictures of me in the hospital, some are not pretty to look at but it's the reality of the situation, I'm not going to say my experience was all rainbows and sunshine! Then post pictures of puppies. There was one lady who joined the page and eventually I just had to remove her because she was constantly badgering me about posting such depressing photos, or saying things that were not true. She had recently had a kidney transplant herself and I guess she couldn't handle the fact that mine had rejected, she sees a transplant as a cure and now she'll live forever, how dare I not consider a kidney transplant a cure. I told her if my page was making her that miserable then she can leave, of course the way the page thing works I had to remove her but that's what she wanted because she couldn't take the negativity. I told her I'm sorry my life is such a downer for you. Otherwise my motto is don't like then don't read it.

[Riki]

that person will find out someday that a transplant isn't a cure.. unfortunately, eventually all kidneys stop, although some will last a long, long time

[Steve-0]

I've gotten a really good response to my blog (the Kidney Boy Blog); mostly what I hear from people is "I never knew it was that way....".... in fact, my mother said she likes my blog, but it makes her cry from time to time because she didn't let herself know just how bad it can get.


Stacy, I like your blog - a lot.  You're biting, and witty, and you voice a lot of the frustrations that many of us feel on a day to day basis being on dialysis and living with ESRD.  You will always have some detractors if you're a voice of dissent, but stay the course.  Dealing with not only the disease, but other's small mindedness just makes us all the more strong.


~Steve

[kitkatz]

I think you are honest in your blog.  I also think a lot of it is hilarious and a  good read from a patient's side of dialysis.

[Jean]

I have never read your blog, but I love the posts you put on here at IHD. Dont let the ***heads get to you..dont stop blogging or writing, Zach has the right idea.