Thursday, August 6, 2009

To Whine Or Not To Whine? That Is the Question

I got an email this week that made me think that perhaps I should make clear my reasons for blogging.

I started the blog partly -- perhaps even mostly -- as a way to keep family and close friends updated about my mystery illness. Before I started the blog, I would send out mass emails updating those who wanted them on what was going on for me: symptoms, medical tests, doctor appointments, etc. Honestly? I never thought that someone I didn't know in real life would ever read my blog more than in passing.

Around the same time, I found Laurie Edward's blog, A Chronic Dose, and realized that I was far from alone; that there were other people out there dealing with chronic illnesses and finding ways to cope. That was my introduction into the chronic illness community on the blogosphere and the Internet in general. I quickly began reading other people's blogs, making connections, leaving comments, trying to both find and give support to others in similar straits.

My blog became a place for me to vent, to share my personal struggles with chronic illness with the void that is the Internet. I feel blessed by many of the people who have reached out to offer me support, and I hope the support I have tried to offer in return has given them some comfort too. I personally find comfort in knowing that I'm not the only one confused and struggling with it all, trying to adapt to new limitations from this mystery illness that shift and change like the wind. And I know I've found some amount of validation, I guess, in learning in the similar experiences others go through whether they have similar illnesses to mine or not. It helps a great deal with the sense of isolation I struggled with early in my illness. (My isolation hasn't changed much, but my acceptance and comfort level with it has. My world has shrunk, and in some ways that makes life easier because I rarely struggle anymore with trying to be my pre-illness self. I guess I'm not sure if that's acceptance or simply that I've given up. I prefer to see it as acceptance.)

My blog, more than anything else, is a place for me to express my emotions and my feelings. It has taken the place of my paper journals that I've kept on and off since I got my first diary as a ninth birthday gift from my brother and sister. Do I whine about my aches and pains here? You bet. Where else can I express how cruddy I feel, other than my blog? In "real life," I rarely burden people (other than my incredibly supportive husband) with the details of how I'm feeling. I know full well that when someone asks how I'm doing, they don't really want the answer. So depending on how much they know of my situation, I either say, "Fine, thanks! And you?" or something along the lines of "I've had better days," and then change the subject quickly.

I'm not a stoic person. What seems like a million years ago, in the mid-90s, I got sent to a pain clinic after my first shoulder surgery didn't miraculously fix an on-the-job injury. It was a workers comp claim, and the pain clinic catered to workers comp programs and insurance companies. In other words, they weren't really trying to address my problem; they just wanted to clear me to go back to work full-time so Labor & Industries could close my claim. At the end of my month at the pain clinic -- where I'm still not sure if the physical therapist was kidding or not when he said the goal of the program was to increase our pain so dramatically while we were there that we felt better when we stopped coming and therefore settled our claims faster -- I had an exit interview with the two psychologists and my then-boyfriend/now-husband was asked to be present. Turns out, the session was more for telling him how to deal with me than for me.

As I listened to them telling him not to offer me comfort when I expressed or acted like I was in pain, to withdraw and ignore me, and reward me with his attention and company only when I acted like I was pain-free, I was flabbergasted. I interrupted to tell them (and Scott) that if he followed their advice, it would likely be the end of our relationship. For me, expressing my pain somehow makes me feel better, both physically and emotionally. If I hold it all inside, I simply end up making myself sick in other ways. (FWIW, it turned out the first surgeon had somewhat botched the job. A second shoulder surgery two years later had much better results, but I still ended up being declared permanently partially disabled by the state of Washington in 1999.)

And I don't think I'm entirely alone. A British study recently showed that swearing has a pain-killing effect. I think talking about the pain one is feeling, whether physical or emotional, also helps lower pain levels. I think that's why support groups are so helpful for many people.

My blog is an outlet for me, and yes, I'm probably going to whine about the places and ways that I hurt, both physically and emotionally. And OK, going by past performance, "probably" is a blatant understatement. :-) I'm grateful for those of you who read my blog (especially those who aren't related to me! :-), and even more grateful for those of you who take the time to comment, either on the blog or via email. I've learned a lot from folks who have commented over the past couple years, and I don't have words for how much I appreciate the support I've received.

But you know what? I'd be writing here even if no one was reading. Because it helps me. And if reading my blog helps someone else figure out their journey through a mystery illness of their own, I'm thrilled. If it makes them feel less isolated and like they're the only one going through something like this, that's wonderful.

But it's not why I'm here. I'm selfish. I'm self-centered. My universe revolves around me and my family. (I firmly believe that's true for everyone, although I'm sure some will disagree.) And as a writerly quirk, I often need to put things in writing to work through them. I don't always know how I feel about something until I've written about it; I process things through my fingertips at a keyboard, often having no idea what I'm going to write until I see it on my monitor. (Hm, that's a telling fact about me that I'm sure some of you will tease me about.) I was like that as a reporter too; I was often surprised by how my stories turned out. The best ones, it often seemed, really did write themselves.

********

For those who are curious, the email that prompted this post:

"My mom passed away on July 27 and I see on that day you complain about every ache and pain. I too have those days but geez........you are a complainer and I am sure the doctors just cringe when they see you on their books. You are wasting their time with all of these expensive procedures. And we wonder why health care is so expensive. Give it a rest."

My response:

"My condolences on the loss of your mother. You must be going through a hard time right now. As for the rest, well, I consider my blog a place for me to vent. I think everyone needs an outlet for venting, and that's where I do mine since I figure no one is obligated to read it and "hear" my whining if they don't want to. I don't burden people with it in person, so the blog is where I let it out.

If you find my writing annoying, well, I recommend you stop reading it."

And apparently she took my advice because I got a notification that she unsubscribed to my blog today.

*******

Meanwhile, many thanks to those who continue to stick with me.

14 comments:

Sherlock said...

First time visitor to your blog -- saw you on Barbara's In Sickness and in Health blog comments. I enjoyed this post and am looking forward to reading more.

Donn said...

good riddance

Anonymous said...

Good riddance to bad readers!

xox Your sister
(who winces when she reads but accepts that she is reading of her own free will and desire to know what is going on without making you repeat every detail for the nth time)

Jeanne said...

Aviva,

Triple good riddance! Where to start? I think I need list form for this blog comment:

1) You shouldn't have to explain yourself to anyone. This is your blog.

2) You explained the purpose of your blog quite nicely, though!

3) A blog is certainly a more efficient way of updating people than sending mass emails with updates. Good for you at making your blog work for your needs.

4) That's great that you found Laurie's blog early on. She has a great blog.

5) Venting can be very useful. Some people may classify it with terms that have a derogatory connotation... such as whining or complaining. All chronically ill patients need a way to blow off some steam. It's unhealthy to bottle things up.

6) It is awesome that you are both giving and receiving support from others. That's the name of the game. Good for you!

7) It IS validating to connect with fellow patients who "get it"!

8) I think the "shrinking-world" syndrome you touched on is simply interacting with people who "get it", try to, or are "mandatory contacts"... such as relatives who may not "get it" but are still in our lives. Subtracting time spent with people who don't care, don't try to "get it", or don't "believe" we're sick... That's called self-preservation.

9) Acceptance is a great thing. I don't see you as "giving up" by a long stretch.

10) Having your blog to express your feelings is healthy!

11) When people say, "how are you?" to me, I have a specific answer that works like a charm. I will not lie. I will not say I'm fine if I'm in agony. I also will not detail my agony to someone who could care less. So my response is, "I'm hanging in there". It works like a charm. No awkward pause. No hurriedly switching subjects. If I say, "I'm hanging in there"... the other person will move on to another topic 99% of the time. It's one of my favorite phrases now! :)

12) I'm not stoic either.

13) I cannot BELIEVE they told your then-boyfriend-now-husband that! That is shameful!

14) Having had a botched surgery of my own, I sympathize w/you.

15) Plenty of studies show how helpful it is to talk with others who are supportive.

16) Whether you call it whining, venting, complaining, or something else... it's your blog and anyone who doesn't like it can easily just choose not to read it!

17) You have a wonderful, helpful attitude regarding supporting others.

(Sorry. Need to split comment due to Blogger character limit. Part 2 coming right up).

Stay tuned...

Jeanne said...

Aviva,

As promised, here is part 2:

18) There's nothing wrong with your world revolving around you and your family.

Personally, I don't think that makes you selfish in the negative connotation kind of way. The word "selfish" sometimes gets a bad rap. There are certain things we should be "selfish" about... not in an uncaring way but in a way that says, "I have to put the needs of my family and myself first". It's appropriate to be looking out for yourself and your family.

19) This next part cracked me up. I too write things and don't always know what they'll be until I am sitting at the monitor.

For example, I sat down to write a post on dysautonomia figuring it might go long and need to be split in 2 parts. By the time I'd written it, it was long enough to warrant a 5 part series (after editing things out).

20) I'm very sorry she lost her mother but that does not give her the right to insult you!

Blaming you for the broken healthcare system really took the cake.

What you happened to be blogging at about the time her mother passed on is hardly something you should be criticized for. What a bizarre thing to say.

That "complain about every ache and pain" line is one that gets thrown at people with certain illnesses a lot. That's one of those lines that fibromyalgia patients like me are all to familiar with.

The "I too have those days" line implies that she thinks she has a clue of what you are going through. (I have met people with this attitude)!

The only person who really knows how you feel/what your pain is like is you! Your family and doctors might have some clue but some blog reader certainly can't compare her aches and pains to yours! It's just ludicrous.

Labeling you a "complainer" is out of line.

Speculating that "your doctors just cringe when they see you on their books" is completely out of control.(Clearly this is not about you. Maybe she's misdirecting her grief over her mother's death at you. That's just conjecture on my part). That part is just a blatant attack on you!

Unless she attends doctor appointments with you, she clearly is not in a position to accuse you of wasting their time. What the heck?!

The grand finale where she hangs the broken healthcare system around your neck like an albatross is just the clincher! Wow... She's very attacking!

21) Your response to her email was classy & appropriate.

22) If you lost her as a subscriber after she cruelly attacked you, I would not lose any sleep over it.

~~

Great post!!

Jeanne

P.S. I have seen this type of thing on other blogs where 1 reader made the blogger upset (or made a darn good attempt to) and the blogger went on to talk about it online. I think it's healthy that you got it out of your system. I wouldn't worry about it for another nanosecond. Remember, it's your blog. :)

Carla said...

Maybe it's because I'm a sick Mum as well, or maybe it's just the way i see things regardless, but in reading someone elses personal journey on their blog I would never see a day of talking about pain, a post about how hard things can be, or information about yet another medical test you are being put through as whining OR complaining. Even if I was to disagree with a blogger, I would not then feel the need to advertise that fact to the blogs author. I would simply stop reading and move on. I say good riddance as well, you are doing amazingly well and have no time for people like that. oxo

♥ Teresa ♥ said...

Hi,

I'm just finding your blog today and I'm so glad I did. You are so correct when you say that we need the support of others. I couldn't agree more. I find it very sad that someone would find the need to be so unkind to you during your time of need. It just makes me so sad. However, I think you handled it with grace and I'm glad that person decided to move on.

I will most definitely be back to read more of your blog. I hope you have a 'good' weekend.

Many Blessings,

Teresa <><

http://toomanyheartbeats.blogspot.com/

Lisa said...

Aviva,

I love this post and deeply appreciate your honesty. Afterall, we are a part of the mutual admiration society among other fellowships.

I'm in shock about the comments from the pain center. I can't wrap my head around it. OMG!!

I find it very curious that some people are intolerant of another person's truthful expression of emotions. I think this is why many people (including myself from time to time) find it challenging to find the right words to label what they are feeling. It's like we're all expected to report on the happy only or we're wrecking someone else's day. It just doesn't make sense. I joke with my husband that I'm dying to post an experimental facebook status such as "My husband is an ass". I believe there would be no comments simply because if it's not superficial, people don't know what to say and stay far far away.

I am so grateful for your openness, support, and willingness to share yourself. I'm so glad to have you in my life. xoxoxoxox

p1nkg0dess said...

Aviva,

I am sorry that you received that message--if I had gotten something similar, I know it would have hurt deeply even if it had no merit (which it didn't!). At the same time, I admire the grace with which you handled it--from your empathetic response to the present post discussing the purpose and result of both blogging and venting.

Your blog has been really helpful to me in feeling like there are other people out there who get it. I actually appreciate that things aren't always sugar coated, that there are "whiney" posts about bad days, because the reality of chronic illness (perhaps especially undiagnosed) is that it can really suck. I think it's really important to acknowledge that and to vent somewhere.

I too am more likely to vent on my blog than anywhere else. First, it simply helps me to write things out. Second, I feel less like a burden to people if I know they have a choice to read or not (without seeming as impolite as changing the subject in conversation). Finally I think other bloggers are going to be the people most likely to understand. Sometimes I wish I were one of those bloggers who has a broader reaching message or profound thought in every post, but that's not where I am at the moment. Maybe someday I'll get there!

Anyway, thanks for blogging about your experiences and for this thoughtful and thought-provoking post!

Canadian Pain said...

My blog came to be for the same reasoning< i found myself giving emails about updates to do with health to friendsand family> (sry my computer is aparently on the fritz i am write now in caps lock to have lowercase but have no control over commas and such so > is a period and < is a comma)

then i reolised not aways did all the people in those emails nessisarily want to know< so if they want to know they can read the blog if not they can not know or can ask me> and it is my place to rant about the things family or doctors always say to me> the useless things>

today i am in bed still< boyfriend left for work at Six am< and it is now almost one pm i did get up to eat earlyer but the pain is nagging and i am avoiding taking meds today since i know today will be a long day as we will be switching over to his afternoon shift> so today i stay in bed to cope with the pain and try to sleep>

we need our place to vent< though this week i was reminded our pains effect others who really care about us> my SO needed to vent about everything the other day< since unlike me he doesnt have others to relate to or talk to>

its tough>

Laurie said...

A little late in the game on this one (was out of town) but, like many, sorry you had to receive such an unpleasant e-mail!

The great thing about blogs is they can be whatever you want them to be--and if sharing your emotions and being honest rubs someone else the wrong way, he/she doesn't have to read! I can't understand the compulsion to e-mail someone and tell them that.

Glad you responded with honesty and grace, Aviva!

Lisa Emrich said...

I just want to say - thanks for blogging!!

Sherril said...

My two cents: I never think it sounds like you are whining or complaining. To me your writing about your own health issues sounds like objective reporting. I've always admired that about your blog.

Miss Waxie aka A Comic Life, Indeed said...

Whoa. Aviva, I realize this post was from nearly a month ago, but reading that took the breath from my lungs.

What a ...i dont even have words. ideas. how rude, how completely careless. how self centered of someone -- who has never met you, who doesn't have to read you -- to think that their opinion is so amazing, wonderful, and comes from on high that you should abide by their wishes.

horrible and gross.

sorry you had to get something so stupid.