Stumble It!
Should I Have?
It is summer, the time of year when our diabetes is most visible, at least for those of us who wear insulin pumps.
This Tuesday, for the first time I can remember since starting on the OmniPod system, I wore a bikini. My usual modus operandi has been to place the pod on my belly all summer long, so I can keep it out of sight underneath a pretty Tankini top. But quite frankly, my belly just can’t take it anymore, so the infusion site rotations to shoulders and thighs are going to have to continue throughout the summer this time around, swimsuit or no swimsuit.
There I sat on a lounge chair, with a towel draped over the offending thigh, watching my girls splash around happily. Even when I got up to check on them, I felt very calm and confident. Who actually cares if someone stares at that little “box” attached to my leg? And stare they did.
Suddenly, a little girl in a polka dot bikini dashed by. I’m guessing she was about 7 or 8 years old. What’s that I see? Could it be? Yes, definitely. On her exposed belly I recognized a pump infusion site, sans pump for the moment. I smiled.
I watched her from my lounge chair, thinking: I should say hello. I should walk right up to her 
and say, “Hey, isn’t that a spot for an insulin pump there? Look, mine’s right here!”
I imagined how delighted she would be to find someone who recognized the thing, and understood all that it represents.
But then I imagined her parents coming over, and the long diabetes conversation that would most likely follow. The truth is, I just wasn’t up for it. The sun was so exhilarating, and here I was feeling so carefree for once…
And then Kerri’s recent post titled “Do I Have the Right?” came to mind, about whether we to have the right to make someone else’s diabetes our business — just because we happen to have it ourselves and write about it regularly.
Like Kerri, there have been times when a diabetes discussion was thrust on me without my invitation. And just a few days ago, while I was guest on a podcast about living with chronic illness, the co-host was groaning about this. People who learn she has cancer will often launch into a speech about “how inspirational” she is, and “what a fighter!”
The attention was clearly unwanted. “I don’t even know how to respond to that,” she said.
So I stayed put on my lounge chair. I didn’t approach this little girl with the infusion site, for both selfish and un-selfish reasons: I just wasn’t up for a big moment of advocacy that day, and hey — maybe she doesn’t want to talk about it right now either. Let’s both just enjoy the pool, I thought.
But later, lying in bed that night, I couldn’t stop wondering: should I have said something? Wouldn’t that little girl have been encouraged to know that others living with the same condition are all around, possibly even swimming in the very next lane? Did I do her a disservice by dodging a precious moment of connection?
I honestly don’t know.
Explore posts in the same categories: Personal Stories, Self-Disclosure
That’s a tough one since there isn’t really any way of knowing if someone will welcome the “Hey, I have a pump too!” conversation. I said something to a woman who worked for the same agency I did, a woman to whom I had never spoken previously so she was essentially a stranger, and she looked at me like I had three heads. This was maybe 4 years ago I think. It never occurred to me that someone wouldn’t be thrilled to meet another diabetic “out in the wild” because at that time, the few diabetics I knew were online, and I longed to know people IRL. Since then, I’ve been reluctant to say anything to others – not that I run into others very often – but when it has happened, I usually mind my business. I can’t imagine not being thrilled if someone approached me, but that’s how I am, and I can’t expect everyone else to feel the same way.
Posted by: Lee Ann Thill | June 25th, 2009 at 6:50 amIt’s always a tough call. Always.
And hooray for wearing whatever you want!
Posted by: CALpumper | June 25th, 2009 at 7:00 amI always say something to a person wearing a pump. I’ve had nothing but good experiences, and I find that the other person is kind of excited to meet another pumper. I am always a bit giddy when another pumper notices mine and says something to me about it. The best was when I was giving a tour of our robotics lab to a group of elementary school students – as they were leaving one girl, about 8 or 9, came up to me and asked if that was an insulin pump on my waist. I said yes and asked if she had one too – she was sooooo excited and whipped out her Cozmo and we compared pumps. Her mother was with her and told me that although she loved seeing the robots, getting to compare pumps with me made her day.
Posted by: Kim | June 25th, 2009 at 7:59 amI’m usually pretty open about it, but I did get a bad reaction a couple years ago. This was from a woman who wore her pump out in the open, which is why I noticed it. I didn’t say anything about her diabetes or anything, just mentioned something diabetes-related that was very relevant to the class we were in, during the break. I guess I just assumed it was OK, but I was wrong. Since then, I’m not really sure what to do.
Posted by: Lili | June 25th, 2009 at 11:54 amI believe that we D-bloggers of the D-OC got into blogging and talking and tweeting about diabetes, so that we would be connected and not feel alone. Yes, because we have our community WE are not feeling alone. But maybe that young child or her parents is. The opportunity for them to see someone who is LIVING with diabetes, might have been an opportunity of a lifetime for them. So often this world is misinformed about diabetes, but if I had the ability to connect with someone who knows exactly what I am going through, I’d take it in an instant.
landileigh
Posted by: landileigh | June 25th, 2009 at 12:35 pmHi Amy–
Thanks for commenting on my blog. It is always fun to hear from other’s who share similar T1 experiences. This is an interesting post and I can’t comment from the perspective of having diabetes but I can tell you how Sydney, my 5 year old T1 daughter, would feel.
Sydney has often felt a little insecure about Daisy, her plastic, pocket pancreas that travels with her day in and day out. She gets “the stares” and “the comments.” Generally if people ask about it, I take the opportunity to tell them a brief synopsis of T1 and why she needs her pump. I figure if they are nosey enough to ask, they should be kind enough to listen while I advocate for my daughter. Syd has had T1 for a little over a year now and a pump for the past 9 months. She is getting better at answering the questions and stares on her own and that is a great joy to see.
That being said, when she sees another kid or person who is wearing a pump, her eyes light up. It makes her day to know that someone is right in front of her who faces the same challenges she does. One man actually saw her pump, whipped his pump out and did a little “pump bump” with her. She thought it was pretty cool. She likes the type of immediate camaraderie that comes from seeing a fellow Type 1.
I would imagine you did neither a service nor a disservice to that little girl by staying on your towel and not engaging her in conversation. Her day was fun without finding a fellow pumper. Her day would have been fun even if you had chosen to talk to her or give her a “pump bump.” I think, for the moment, both of you were just enjoying the carefree-ness that playing at the pool brings.
Posted by: Shamae | June 25th, 2009 at 1:11 pmAmy,
I can see both pros and cons to bringing up the “pump” subject while on the beach. I work as a teacher, and know how overjoyed a newly-diagnosed Kindergartner (and her parents) felt when they found out that someone else at school had diabetes, too. Of course, you were dealing with a complete stranger.
I recall taking out my BG meter on an airplane once. It turned out that the guy next to me had another health issue (not the big “D,”) but he told me, after our plane landed, that I had been an inspiration to him and that he was going to work on taking better care of himself because of what he had witnessed me doing.
Posted by: June S. | June 25th, 2009 at 2:12 pmDitto to what Kim said. I’ve never thought twice about approaching someone who is wearing a pump and I’ve always had good experiences with it. Usually both of us are thrilled to talk to each other.
Posted by: Lyrehca | June 25th, 2009 at 7:36 pmThe fact that you considered talking to her, and then ultimately chose to let her simply enjoy her day at the pool; both demonstrate the same thing. You care. And that says more than about advocacy than any amount of verbiage ever could.
Posted by: tMAc | June 25th, 2009 at 8:03 pmThank you, Tim! It’s nice to get a truly kind comment now and then. Maybe it’s the Mommy-Complex in me, but I sort of felt guilty with this little girl either way.
Posted by: AmyT | June 25th, 2009 at 9:20 pmMy daughter who is almost 5 is thrilled to meet another diabetic. When someone sees us checking her finger or giving an injection and asks if she knew that they too are diabetic, her eyes light up and she says “You are?!” I think it’s comforting to her to find comrades.
Posted by: Leighann | June 26th, 2009 at 11:31 amAmy-
You did the right thing at the right time. Next time the situation may be a little different. Sometimes when I see a fellow pump wearer, particularly an adult, we just signal each other and wave. In some ways it’s like meeting someone at a party wearing the same dress. One person might love to talk about where she got it and the good memories related to the outfit. The other might avoid you for fear some social faux pas is afoot.
Posted by: Chris | June 27th, 2009 at 11:15 amNo. You did the right thing. The child was 7. Children do NOT like to be “interrupted” with diabetes care (they want to get it over with as quickly as possible and go about the business of playing) and advocacy places another burden on them. If you were in the mood, you might have approached her parents. You do enough. You are not on call 24/7. You and your family deserve some “down time” too. Hope you enjoyed the sunshine.
Posted by: Jan | June 29th, 2009 at 7:44 pmHi Amy,
I remember reading Kerri’s post and something dawned on me while reading yours. The two of you are both diabetic celebrities. It is your JOB to talk about diabetes. Many of us have the opportunity to talk about our diabetes with another diabetic maybe once a year, and another pumper far less than that.
I understand both you and Kerri’s desire to not be advocates all the time. But, please, if you ever see me out and about and notice some pump tubing hanging out from my shirt, don’t walk away without saying anything for my benefit!
Posted by: chrisk | June 30th, 2009 at 5:34 am