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.