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When Other Diabetics Talk Down to Me

September 30, 2013

I would be lost without the supportive communities and friendships of other PWDs. It’s the peer support and information exchange that keeps many of us from burning out entirely.

That said, sometimes interactions with Type 1s leave me feeling alienated or condescended to.

As a relatively “young” diabetic (diagnosis 3 and a half years ago), it is not uncommon for “older” diabetics to speak to me with an authority that ends up pissing me off. It’s a subtle thing, but I pick up on it.

For example, I recently met a lady who is celebrating her 40th year with type 1 (amazing!). I introduced myself as a type 1 as well, diagnosed at age 26. “Aw, you’re a baby,” she said sweetly.

I’d been called a “baby” enough times to have reflected on the not-coolness of that comment. In a friendly way (cuz the last thing I wanna do is start fights with my fellow T1Ds!) I said, “that’s not cool, I’m not a baby. I’ve had three hard years of 24/hr a day work, and I live this all the time. I’m as diabetic as you are.”

It’s true, I don’t know what it’s like to live decades-long with the disease. I have no first-hand stories of principal-office visits for insulin shots or awkward adolescent diabetic rebellion. I can’t speak about the NPH and R days with any personal authority. But I do have diabetes, and it has consumed more of my life than I’m happy with.

And believe it or not, I know my diabetes better than you know my diabetes.

There’s a subtle difference between offering advice in a collegial way, and in a way that implies that I know less than you do. I’m THRILLED when more experienced diabetics have showed me the ropes. My knowledge of how to fiddle with temp basals and square wave boluses, and simply how to navigate the emotional swampland of burnout, comes almost entirely from other PWDs.  When people offer advice because they know it’s helpful, and they understand where I’m coming from, it’s awesome.

I shut down though when I sense that a diabetic is giving me advice because they think they know best. I once found myself feeling pressured by another PWD to try the sensor. “I’ve already tried the sensor, I just don’t like it,” I had replied. I explained how I just found it information-overload, that it contributed to my sense of technological burnout, that my insurance didn’t cover it, that I regularly got allergic reactions to the adhesive, and that the sensors would often fall out after a day or two. He continued to tell me how great it was, even suggest that I ask my parents to buy me a set of sensors for the year as a present (if my parents are to offer me a several-thousand-dollar gift, I’d rather it go to something I actually want). I didn’t hear him hearing me. I heard that it worked for him, and therefore, in his mind, it ought to work for me.

In another recent conversation with a PWD, I mentioned that I was on a pump-holiday. “I’m really enjoying the pens right now,” I was saying. (And it’s true: it’s been over two months off the pump and I’m really happy about it.) I really wanted to talk about how amazing it felt to be off the pump right now, with someone that can actually understand first-hand what life is like daily on the pump. What I heard instead was a statement about how shots just aren’t effective. She went on to talk about how impossible she finds the pens, how easier life is on the pump. I had wanted to hear: “cool, I’m glad the pens are working for you right now. I’m really happy on the pump.”

I understand why we diabetics can be stubborn, and why we can speak with authority with each other about “what works,” rather than “what works for me.” When we find something that works for us, it’s easy to cling to it emotionally. Diabetes management is so deeply personal that maybe we need to guard it jealously.

Us PWDs need each other. Like any essential relationship, there is always work we can do to improve how we care for one another. And I realize that I am sensitive, maybe reading too much into some of the subtext from these conversations. But my diabetes is mine, and I know it best. It has caused me too much grief, anger, frustration, loss, and growth, for me to let anyone else claim to know it better than me. So I am sensitive. And it is personal.

 

 

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One Comment leave one →
  1. michelle s. permalink
    September 30, 2013 11:26 am

    Many people have such a righting reflex, a need to FIX, that it gets in the way of listening. Advice giving, correcting, directing, instructing…. all those things get in the way of listening. We all do it sometimes which is why self awareness is important! I think if you let people know how it makes you feel, while maintaining some empathy for them and their need to fix, you can help others gain insight. Better than bottling it up and getting resentful, that’s for sure. Great post. 🙂

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