Thursday, August 6, 2009

Medical Stuff, How Much to Share?

I struggle with how much of my story to share. With infertility I was ultra-transparent. With other chronic illness, I don't feel quite so inclined to spill "the good, the bad and the ugly," at least not all the time. I'm a huge believer in peer support, that it is critically important to the mental and emotional well-being of someone living with chronic pain/illness to know we are not alone. And how will we connect if we aren't open about the issues?
And yet there's just something daunting about having my medical history plastered all over the internet. Some days I feel very open and "tell all" while other days I worry about the reality that once something is posted on the internet, there's really no "taking it back," or realing in the potential long-term impact of revealing the reality of my struggles.
I know I post more than most, and usually I'm OK with that, but other days I stop and wonder if being so transparent is really the wisest of ideas? I certainly hold back more than I share because of that nagging sence of the unknown impact of the internet. Today's a day I feel overwhelmed and want to just spill it all out, but do I really want my great=grandchildren (or yours?) being able to access today's struggles generations from now? I just don't know! *sigh* Maybe I'll create a password protected blog where I can share all, yet not allow universal access to my thoughts???
How about you? Are you a tell-all kind of gal when it comes to your health, or do you guard your information as private? I really can see both sides of the fence!

P.S. I'm on day 4 of a migraine I thought was resolving yesterday but was back with a vengance at 4am. I'm fighting for everything I'm worth to keep from throwing up because I'm afraid that once that part starts, it won't stop easily! (I've been continually nausious for about 5 weeks now with ongoing digestive issues, but this is a new migraine-related layer of nausia on top of the pre-existant virus or whatever it is I already had going on.) I had a 45 minute drive up curvy mountain roads (well ride actually, as I can't drive myself that far) for blood draws yesterday morning, followed by an hour back down the mountain and stopping at another doctor's office for follow-up x-rays on my foot. Today I see my primary care doctor to talk about the new medication that was called into my pharmacy yesterday that I'm not even sure what it's for, and Sunday I start IVIG treatments with my first IV anticipated to take 4-5 hours to administer and weekly infusions for the next 12 weeks. So there it is, today is a "spill it" day afterall.

1 comment:

Jeanne said...


What a fascinating topic... "how much should we reveal online about our health issues and/or personal lives"?

I have struggled with this one myself. I tend to reveal quite a bit about my health issues. I don't use a full name for blogging (for privacy reasons) and sometimes I think this "perceived anonymity" results in me sharing things I wouldn't necessarily share otherwise. Sometimes I catch myself doing this.

It is possible to share too much and with the Internet once it's out there, it's out there, like you said. Removing data won't take it off cached files and such. Once it's published, there's no way to guarantee "getting it back".

I am much more open about medical issues than personal ones. I try to guard what I share from my personal life. I pick and choose carefully which non-medical stuff to share. I don't share all medical issues either.

Sometimes blogging about health issues of mine could infringe on the privacy of my loved ones, for example. I work on a case by case basis.

The benefits of connecting with fellow patients can be huge but over-sharing can be a problem. So I think it's about balance and judgment, at the end of the day. I try to share but not over-share and use my best judgment about what to share and when.

I really hope you feel better soon! I'm sure the travel on a mountain didn't exactly help your nausea. I'm sorry. I hope your migraine goes away quickly and that your IV treatments go very well.

Take care,