Basically, I say "vagina" and talk about my vagina all the time.
In the infertility community, we get to say lots of words that would otherwise make us squirm or giggle. We are forced to become situationally cozy with words like semen, uterus, sperm count, cervical mucus. It's a very romantic lexicon of assisted babymaking.
(That last paragraph should do wonders for my SEO.)
Sure, we can say these words in our private face-to-face conversations with partners, doctors, and close ALI confidantes. Really, this issue is not about these specific words - it's about sharing these formerly private medical-related conversations in the Virtual Public.
How does sharing some of our most intimate medical details with others play out in the context of social media?
Twitter as Public Conversation
When people ask me to describe Twitter to them, I say it's like a million people all talking at once, 24 hours a day. If you want to hear only what your friends are saying, you have to make an effort to pay attention to them. Maybe you take them aside in their own room to hear them a little better. I then explain that's how third-party clients like TweetDeck and HootSuite work: they're special gathering spots so you can hear only the conversations you want to hear.
When folks ask me about hashtags, I explain that they're another way to distinguish a single conversation topic had by millions. That maybe you create your own room (column-view in a third-party client) of a particular hashtag to hear what everyone has to say about, oh I don't know, #vaginas.
When I'm tweeting about #infertility, I obviously use that hashtag. I want to make sure my voice is heard in that specific topic area. I use hashtags all the time. Sometimes I like to play around with a particular trending topic (like yesterday's #whendiditbecomecool) to promote something for the #infertility community, e.g., my tweet yesterday:
Twitter can be a very loud, fast-paced forum with millions of ideas, thoughts, flashes of brilliance and utterances of drivel all happening at once. It does take a little time to get comfortable with all the shouting and to start sorting out whose voices matter and whether what they're saying is of any worth.
Conversations of Authority and Establishing Trust
The fantastic thing about Twitter and other social media platforms is that we can instantly connect with other patients and health advocates. We can connect with doctors, clinics, agencies, and non-profits. We can also connect with thousands of spammy scammers who will happily hawk their crap at you under the guise of a trusted hashtag. Case in point: just following #infertility brings me hundreds of tweets for Pregnancy Miracle/Get Pregnant Fast infertility "solutions."
In order to have meaningful patient community experiences on Twitter, it's important to take the time to separate the wheat from the chaff, to determine just who in fact are the leading voices of authority -su the credible, reliable sources of information.
We have to then spend time cultivating those relationships that we trust. If we auto-follow every person who follows us, we may inadvertently help feed a spammer. Every time someone follows me on Twitter, I get an email. I click over, I read a little about them, see how many tweets they've made and how many people they follow, maybe check out their website to find out more. If you're a spammer, I report you as such. If you don't have a description, I definitely don't follow back. And clearly, I don't follow everyone who follows me (nothing personal).
I take the time to screen and vet who I follow as much as possible. I do this because I want to make sure any tweets I retweet are from credible sources. I know there are people who follow me for credible, reliable information and I'd be doing a disservice to those who trust me if I didn't extend that same level of care and intention about who I follow and what information I share.
Herein lies the some of the challenges about sharing medical information via Twitter and other forms of social media.
Quacks, Hacks and Lasting Impressions
I love being able to connect with other patients and medical experts on Twitter. I've formed Twitter-only colleague relationships with other health advocates. At face value, Twitter is an amazing arena for the exchange of ideas, research, and innovative thinking about patient care. But when you start to dig deeper, you start to see more tweets like the Pregnancy Miracle ones that drive me batty. But they're not necessarily all spam - they are in fact real people who represent the Not Exactly Voices of Authority, aka, the Quacks.
Look, I'm flattered that you've decided to @ me to tell me there's a natural, safe cure for my infertility, I really am; but unless you're selling me a brand new set of ovaries, no amount of whatever you're trying to sell me is going to magically or "naturally" turn them back on. That's not to say I'm throwing my glove down at the natural, homeopathic, or alternative fertility industries: personally, I think there's a lot of value to be had in mind/body techniques as well as acupuncture and TCM - the caveat being that you're under the care of an expert professional in those fields. But no amount of herbs or relaxation is going to restart my ovary without anything short of divine intervention.
The other challenge to consider is the possibility of account hacks. If you don't have a spiffy set of passwords you rotate often or log in willy-nilly to your favorite websites on free wifi networks - expect to get hacked. And once one account gets hacked (especially if you're using the same password for multiple forms of social media), the rest of your accounts can fall like dominoes, the most devastating of which would be an email hack. Think of any email conversations you might have with your doctors and therapists: if your email account got hacked, any of that otherwise private information could be leaked. Not to mention once your account has been hacked, there can be many virtual hoops to leap through to get your access back and regain control of your account.
The final thing to consider about having private medical conversations in a very public arena is the lasting online legacy you build for yourself. Some of you might not care and honestly, who knows what the internet landscape will even look like in 20 years. But the fact of the matter is that our words in these public spaces become tied to our virtual identities, that may or may not reflect our actual IRL identities, and in the endlessness of the internet, these words will last far longer than us. In fact, every time I tweet, I'm getting archived into the Library of Congress. And so is every other Twitter user, including you.
Consider this: 20 years from now, when someone searches for your name, do you really want your cervix length and your husband's sperm motility coming up in the search results?
To Tweet or Not to Tweet?
So we're left with the question of what's a savvy Twitter user like me supposed to do? Simple answer: it's a matter of personal preference, comfort, and how much you're willing to risk by sharing personal health information online.
Long answer: there are lots of things to consider so weigh the pros and cons of each question below to decide what's best for you.
- Why are you using Twitter in the first place? This is an important question people should be asking themselves anytime they sign up for the latest, greatest social media platform. Why are you using it? Are you a casual user, looking to meet folks of similar interest? Do you like to stalk celebrity Twitter accounts? Or are you looking to make solic connectoins with other patients and professionals in the field? Or is it a little bit of everything? Establishing why you use a particular platform is the first step to guiding just what information you choose to share in that arena.
- Should you protect your tweets? While this is one way to avoid being archived in the Library of Congress, it does make it slightly more difficult for people to find and follow you. You'll have to manually approve every person who requests to follow you and whether or not they can see your tweets. However, it doesn't protect you from one of your followers from mentioning your name and repeating your personal health info within that tweet.
- Should you crowdsource or put on your Dr. Google hat? Sometimes I'm looking for a specific answer and rather than throw my query to the wilds of search engines, I'll ask the question on Twitter. Usually, I get trusted answers pretty quickly rather than having to weed through search-engine optimized results. But you have to be careful about what medical information you request, whether it's in the form of a question to the masses on Twitter or in your Google search field. It all circles back to trust and established, credible sources of authority.
I haven't even framed this post with regards to blogging and there's plenty to consider in that platform, too. I'd love to hear how other people choose or choose not to share their personal health details online.
Do you tweet it all in every intimate detail for the world to see with nary a care? Are you selective about what you post? What precautions do you take? What are some other concerns I may have missed here? How do you decide what personal health information will be shared online - if it even gets shared in the first place?
What do you do?
And... am I the only person who uses the word "vagina" in casual conversation?
6 comments:
I will occasionally talk about the fact that we had a miscarriage. I have also shared some of my feelings regarding my inability to get and stay pregnant, and I have been known to talk about PCOS or my lack of cysts at my last appointment (YAY!).
But I never share intimate medical information. And honestly, I rarely discuss that information with people in my life. My husband and I talk about our options, but I don't feel right putting it on the internet. In fact, I only talk about PCOS in general (symptoms, etc.) to help other women who may struggle with weight, depression, etc. It is not, however, my intent to share ALL of my personal experiences with the disease.
I'm not on twitter, but I can say that I don't share my 'vagina monologues' with anyone but my husband and my doctor. No one in my family knows that we went through treatment, or that I had a miscarriage. It isn't because my husband and I are ashamed, it's because I'm a Yankee, and we just don't talk about our private business and 3 things are considered taboo 1) your health, especially anything around your crotch, butt, or breasts 2) how much money you make 3) your relationship with g.od. For example, my grandparents both died of cancer within months of each other, and no one even knew either one of them were sick. The really good side of this is that NO ONE in my family ever asked me when are you going to settle down or when are you having kids. Never.
As for the word vagina: I too prefer to use the actual medical terms for body parts, procedures, and biological functions. I HATE the term 'aunt flo' or AF. It is a menstrual period, people, it isn't gross, or icky, it is what it is. If you should be lucky enough to get pregnant your OB will ask you when your last menstrual period was at every visit. He/she will never ask you about your 'aunt flo'.
This is awesome. I am still trying to figure out Twitter, and to use it for good, not evil. :)
I think there's a fine line between sharing the personal things that will last forever in digital archives and being advocates by telling our stories.
Also: I taught a sex ed course for teens once that spent the first class making them comfortable with the language of sexuality. It was great to take the air out of some of those "charged" words, and make them OK to use!!
I don't tweet so I can't give good feedback on that topic but I LOL about your casual use of the word vagina. I was recently at a dr. appt. and told the nurse I have a very specific speculum that works for me. She looked at me like I was crazy and the dr. just LOL. She was like - you know you've been to a lot of appointments when you know your speculum size!
thanks for the tips, Keiko.
I think I do share too much, probably (on my blog, online) but not in real life. Gotta have some place to let it all hang out..
Hmm,good questions. Tough for me to answer! You are making me think and that can be a dark and scary thing to do for me LOL.
I am well aware I talk about my medical issues on my blog, Facebook and twitter. Particularly cancer. I want to talk about it, I want to make people aware of it. If someone searches me twenty years from now and comes across my chemo puke days, or the surgery to remove a tumor that hurt so bad just changing the bandage I puked some more then good! I hope it will make them think twice before going into a tanning salon.
I am pretty much an open book. I tweeted about thinking I was pregnant. I tweeted about my period starting so it was a false alarm. I tweeted about my husbands failed vasectomy and our two pregnancies via birth control.
I would rather read tweets and blog posts about someones cervix than foul language hate posts any day. I say, keep on with the vagina talk.
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