Painful Secrets?

Day 2 of Diabetes Blog Week #Dblogweek:

It is Diabetes Blog Week.  Karen at Bitter Sweet Diabetes wrote (in 2012?), “If you don’t have a blog but have thought about starting one, now is the perfect time”, so I did (which was my first post).  For more information on Diabetes Blog Week please check this out. And thanks Karen for putting this all together.

Keep it to Yourself 
Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  

I started writing my response to these questions, about my dating life and thought maybe 10x that I should go with this from a different angle or just not at all, but I work best with a stream of consciousness approach and heavy doses of unedited “winging it” so here goes.  I was in a serious relationship when I started this blog years ago and my then partner was referenced in my early posts, often.  I have not tackled dating here for a multitude of reasons, and diabetes is not the reason I didn’t find “the one” (please note that there is an eye roll that goes with typing that, “the one”), but diabetes has played a role in my relationships, to varying degrees, along with many other non-D aspects of life.

There is something specific to dating that has occurred with me in recent months.  If you have followed me on twitter, or you know me, you might know I participated in an Artificial Pancreas trial back in November.  It was pretty incredible.  Since that time, I wrote about my experiences for JDRF, A Sweet Life, have spoken at various JDRF Type One Summits, spoken on behalf of Mount Sinai hospital, did interviews with some diabetes publications, ended up on the local news and witnessed a newspaper interview I did, get picked-up internationally.  Wow.  Sounds braggy right?  I agreed to all these things for the reason that I want people to understand and learn about T1D.  I want to help further the cause and if my body and my time enabled Artificial Pancreas research to progress, then I can use my mouth and my brain to explain both my experience and also why I believe research and diabetes research funding are so damn important.  I could go on and on, but that’s not the point of today’s post.

What I considered but didn’t really fathom, was Google.  I don’t hide the fact that I’m T1D (or PWD, but I never remember to use that terminology).  I have been google-able for a long time.  As far as T1D goes, my JDRF Walk team has had fundraising stuff all over the damn interwebs for years.  There is no hiding and that’s not my desire anyway.  The press over the AP trial though, I didn’t/don’t control.  An article that says I’m haunted by T1D (Seriously? I want ghosts if that’s true.  I want ghosts that can go do stuff for me… pick up dry cleaning, walk the dog, give me a massage and go scare my obnoxiously loud neighbors, etc).  According to a reporter, I haven’t had a good night’s sleep in 35 years (I was diagnosed in 1979.  I must look like a zombie!).  I am a horrendous sleeper but not just because a Dexcom has beeped at me periodically over the past few years.  I live in Manhattan.  It’s effing loud here, people. Or my favorite, that I’ve “suffered” with T1D since I was a child.  Yeah it hasn’t been a walk in the park, but the word “suffered’ is drop-kick worthy to me. You get the point.  Sometimes the facts were corrected in online press, but printed press is, well… printed.  And now when it comes to dating, and even in some recent business situations, people actually Google me.  Instead of explaining to someone new that I’m T1D and what that entails, the internet gives them a slew of information, not necessarily spun how I would introduce it and sometimes not quite accurate.

Can I have Space Ghost?  Chiseled jaw and funny? Check.

Can I have Space Ghost? Chiseled jaw and funny? Check.

I have to admit though it isn’t all bad news for dating.  I went out with someone a while ago who I had to keep rescheduling our get togethers (yep, I’m good like that).  At one point, in a casual conversation, he text me that he had Googled me.  Oy.  He made comments about my career success and some photos (hey thanks), but he never mentioned T1D.  I knew he knew.  So I waited, until I actually wasn’t rescheduling dates and while we were out, he seemed to bring it up -ish, you know, Google and I helped him out.  We discussed T1D.  He clearly did some homework (huge plus in my book) and finally asked where I put my pump.  I pointed between my boobs (I rarely wear my pump there but the dress I was wearing had no other good spot).  Nothing like an ice breaker where you have actually encouraged a guy to stare at your chest.  And then it happened, I know this sounds like a Romantic Comedy, but as soon as I pointed to my chest, I went over my target blood glucose (ps I’m on an Animas Vibe and the screen was facing outward) and my pump beeped and then lit up!  Right through the dress, a blue light. Yep so I had a guy staring at my boobs and then my chest beeped and lit up like I’d swallowed a strobe light.  After explaining, “no I did not do that by pointing at my chest”, it was good for some laughs and then I’m sorry to say, unlike a romantic comedy, he wasn’t “the one” either, but the two other times we went out, I was truly amazed at how he showed-up clearly having done more and more T1D research and we have actually stayed friends since.

There have been some, what I consider, bee sting moments too (well more like a wasp).  In a way, I am relieved I can weed out the “possibles” from the “toss to the curbs”, thanks to some AP press, but let’s face it, those bee sting “Oh Wait,  You’re Sick?  I can’t handle sick!”  moments happened both in my 20s and 30s.  They were rare, but yes, they happened and nothing has ever been as shocking as a 3rd date I went on in my late 20s where the guy went nuts on me in a restaurant about how I misrepresented myself and he doesn’t deal with sick people.  It was awful, he had had a few drinks, got louder, wouldn’t shut-up and I left in tears.  The end of that story though is I’d been set up with him by a friend and a year later she told me he had testicular cancer.  I wouldn’t wish that on anyone, even a boy who made me cry, but maybe he has a different perspective on “sick people” now.

So there you have it.  This is one of a few things I don’t talk about online and for the record, I would do another AP trial again in a heartbeat.  I would do all the press in the world and write as many stories about it as I could as I believe so strongly in research.  The clinical trial experience is like nothing else I’ve ever done and it opened my mind and my heart to the people who are trying to bring this technology to all of us haunted by T1D (sorry I couldn’t resist).  I might get a Casper cut-out on my bike for the JDRF Burlington ride.

And as for the question of why this is important to keep to myself, I just realized it isn’t, is it?

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10 thoughts on “Painful Secrets?

  1. Wow… thanks for this window into your world! (and I don’t mean the blue light-up window in your chest). It’s really quite telling and I respect you for writing it. I’ve tried hard to keep my professional and personal lives separate (hence my unGoogleable last initial) but never really thought about what would happen if they intertwined, or if it would be a big deal at all or not.

    I’ve also been wondering how you’ve been doing since that serious relationship dissolved. He seemed wonderful (seriously, *I* wanted to date him!) but things sometimes don’t work out. I’m no matchmaker, but I might know someone…..

    • Thanks Scott. It wasn’t THAT hard to write, but when I reread what i wrote. I’ll admit all those bee stings added up and there were some moist eyes. Then I pressed “publish” and that was it.

      Get working on your matchmaking skills. Prerequisites: kindness, sarcasm, wit, doesn’t mind spending exorbitant hours listening to mindless cycling stories!

  2. For the record, I’ve never Googled you. I so appreciate how dedicated you are to research, and I would participate in a clinical trial again in a heartbeat, so I’m right there with you.

    I think you’re in a “this is who I am, deal with me” period. And why not? Everything you’ve done is worthwhile and important. Anyone who can’t see that isn’t paying attention. If someone expects to get the best from you, they need to be able to see the best of you. That’s my two cents.

    • Thanks Stephen, you are such a dear friend and always such a boost in my world. I think part of my not sharing this before is that it is terribly personal (and weird) but also I don’t ever want to discourage someone about relationships, as relationships are hard T1D or not.

  3. I’m so sorry you left in tears. I hate that unworthy people have the power to make us feel that way.

    Thank you for sharing your diabetes dating successes & failures with us. And I hope you know that the success & failure of each both in the past and in the future re: diabetes has nothing to do with you and only how good each of those you have dated is.

  4. You are funny. Very funny. Hilarious actually. Your mentioning of the ‘added for dramatic effect’ verbs resonated with me. Big time. You said it so well. Thanks for your sweeeeeet post.

  5. You are so awesome and so strong. I love your attitude and your humor and your positive outlook. Thank you so much for sharing and continuing to share even though you’ve had some bad experiences. When you write a blog you can control what you say, how you portray yourself, what you share, but as you you talked about, your story takes a life of its own when it’s in the hands of the press. It’s something I never really thought about much, or the consequences it could have, good and bad.

    What a well written, great post. I know I don’t know you, but I’m completely confident that you’ll find “the one” that completely accepts you diabetes and all 🙂

  6. I really enjoyed this post – you should write the romantic comedy that opens with that meet-cute! I’m horrified on your behalf at the last story – what a terrible thing to say to a person. I hope he became more compassionate from his own struggle.

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