Et Tu, Brute?

CaesarCaesar got his on the Senate floor; I got mine in a bright conference room.

The meeting yesterday was going well. One of my goals after settling into the house was to become involved with the local diabetes chapter, and I’m so glad that I reached out. The people I’ve met there so far have been enthusiastic, engaged, and forward thinkers. I’m looking forward to seeing what they come up with to provide support and research funding opportunities  and to lend a hand (thankfully, not a shoulder) and my talents where they are needed.

Another new individual was attending this meeting and he soon realized that we were the anomalies; T1s with at least 30 years under our belts (or our non-functioning pancreases). With the DOC and many face-to-face meetings of other T1s in the past few years, coming into contact with another T1 isn’t much of a big deal to me, but reflecting on what happened, I can only assume that he rarely has opportunity to chat with other people with diabetes.

The conversations flowed about the topic at hand, which wasn’t about diabetes management. He would interrupt and ask questions every few minutes, which were politely answered. I understood he was eager to learn about the project, had lots to say, and was retired. He had all the time in the world. I didn’t. I was eager to get through the meeting in the allotted time I had scheduled for someone to watch The Kid.

He wanted to talk about how we (he and I) had so much to offer newly diagnosed families and individuals because we’ve had diabetes for so long. I had to stop him. And so I did, as politely as I could.

“Skippy (not his real name, but I think it’s a cute one), while we have had diabetes for quite a long time, our experiences are very different. In fact, all people with diabetes and their families have different experiences, so it’s hard to just say that because I’ve had diabetes for 30 years, I’m better qualified to talk with someone. For instance,” I added, “even though you and I are both Type 1, you most likely didn’t deal with an eating disorder called diabulimia in your youth. I may be better suited to talk with parents or kids who may be experiencing that.”

And then it happened without warning. I didn’t even feel it until it was in up to the hilt.

“But you look so healthy.”

I’m almost immune to the crazy comments I hear these days when people find out that I’m living with diabetes. To hear one of my least favorite responses coming from another Type 1 left me mentally staggering around, trying to pull that knife out of my back.

Ours is an invisible disease. Yes, we may wear insulin pumps and CGMs and medical alert bracelets, but if we are doing it right, people can’t tell we live with a chronic illness. (And sometimes, even when we’re not having a great day with diabetes, it’s still invisible unless you know us well.)

I’m healthy. For a Type 1 who had multiple treatments for trigger finger and frozen shoulders.  For a Type 1 with a clinically significant macular edema diagnosis and laser surgery to stop it from getting worse. For a Type 1 with a past of diabulimia and emotional stress of living with a chronic illness. For a Type 1 who is scared of being a victim of dead in bed syndrome. For a Type 1 who deals with serious hypoglycemic episodes and the consequences of them.

The disease is invisible. So are the battle scars.

I’m worried that if he sees me as healthy, what does the public see in us?

  • Healthy and therefore less in need of support or research for a cure?
  • That the majority of us live long lives and therefore don’t need to focus on eradicating this disease?
  • Not living on borrowed time because we can “manage” what we ended up with?

That we’re fine?

We aren’t. Except not everyone can apparently see that.

Even other people with diabetes.

 

 

 

0 comments

  1. Lora

    It was nice to meet you yesterday 🙂 I was a little taken back when Skippy lumped you into a one size fits all category myself, i dont think ive ever heard another T1 do that. I do, however, think you handled it beautifully in spite of the mental staggering 🙂

  2. fifteenwaitfifteen

    My thoughts exactly. Scary that a fellow Type 1 would say that??!! People see me on the outside as overweight, and assume I have Type 2 diabetes. They think that because I “look” healthy (despite aching feet and knees), I should be able to lose weight easily and get “rid” of my diabetes. They don’t know that every time I undertake a new diet and exercise regime, I deal with crashing lows and crazy highs just trying to get a handle on it all. I literally fear for my life. And it sucks.

  3. Katy

    He sounds super-annoying. Even just the drawing-out-the-length-of-the-meeting was bad enough, before the attempt at bonding. Did he also have bad breath?

    But I noticed I (silently) think ALL three of things in the bullet-pointed list at the end. Probably because I’ve been working overtime to convince myself this isn’t so so so bad? & everyone’s going to be Just Fine? with maybe an added bonus of being very good at mathematics?

  4. Scott E

    For what it’s worth, I don’t think you look healthy at all. You look like you’ve been through the ringer, with one foot in the grave and another on a banana peel. I think your life must be just dreadful.

    Kidding, of course. (And if Skippy actually said that, I doubt that you’ve felt any better).

    When I hear people think or assume I’m healthy, I take it as a compliment. “Thank you, I try…” is my typical open-ended response, hinting that it didn’t happen by itself. Sometimes, I work really hard to make my diabetes look invisible, and when I get those responses, I know I’ve succeeded. (I don’t try as hard anymore these days, because I *want* to spread the word and the knowledge – but that’s a different story). Perhaps it’s the “But…” that preceded his statement that was so troubling.

    To your last three bullets, that’s what being vocal is all about. I don’t want people to oversimplify what we live with based on appearance, because then they (the public, who may choose to support all those things you wrote about) won’t fully appreciate it. Diabetes is a complex disease, and unlike some other fundraising-efforts, there’s no way to capture it in an image on a billboard or in a mail-solicitation. In this case, a picture can’t cut it — we need a thousand words.

  5. Mike Hoskins

    Other person: “You look so healthy…” Me: “Thanks! But it’s no thanks to my insurance company that has been trying to kill me off for years. And they try to steal my test strips. It’s really amazing I am still alive and kicking.” 🙂 #rantover

  6. StephenS

    Crazy, isn’t it, that some people only see diabetes (and its complications) as our fault, but if we don’t fit their stereotypical image? We look sooooo healthy. Sometimes listening and trying to understand are really important. Actually, that’s always really important.

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