Watching various comments on multiple diabetes websites and pages I’m often taken aback by how it seems the majority of commenters feel about their disease. It sort of struck me anew yesterday when I realized I was reading a thread full of comments that were commiserations about how difficult and isolating life with diabetes is.
I started thinking about how often I’ve said (a few times) and thought (many many more times): “but you don’t know how it feels to be ___(fill in a BG of your choice).” I have a doctor’s appointment later in the week so my doctor is on my brain; she doesn’t have diabetes and I wonder how many times she has received this sort of comment from a patient.
I know I’ve said it to my husband.
Friends have asked me through the years, and you probably know as well as I just how difficult it is to explain what a high or a low really feels like, from the inside.
I know I’ve thought of my blood glucose levels when clients complain about being too tired to work out, or when coworkers say they were out late. I wonder what they’d say if their CGM was alarming through the night and they couldn’t get their BG up or down to a safe and restful level.
It makes me wonder.
Because, at the same time, I’ve had clients report they couldn’t work out due to a migraine. I’ve seen coworkers barricade themselves in a dark office and put their heads down on a desk to try and stave off a migraine attack; I don’t know more than a headache.
I don’t have arthritic bones that ache. I don’t have joints that have never quite worked right, without pain. I don’t wear dentures or have a metal screw in any of my bones.
I don’t have food allergies that make me quiz a restaurant before I go, before I order, and face a plate I’m not quite sure will send me to the ER.
I’m not allergic to bee stings or poison oak that make me fearful of being outdoors.
I mention all of these, because I’m not sure if feeling a high or low blood sugar from the inside is what counts for someone to comprehend or commiserate or celebrate about life with diabetes.
This isn’t to say that I don’t love hanging out with my diabetes peeps; the shorthand is amazing and fills me with a peace I don’t find anyplace else.
However, I don’t think it’s right to automatically disqualify others from my life with diabetes because they don’t know how it feels to be a certain BG level.
I just need them to know that I’m trying, every day, and some days it works and some days it doesn’t. I need them to understand that for me, a number matters. A level changes my physical energy, can drain my strength, and can make me question my actions on a level of self-analysis of my body most don’t reach. I need them to respect that it is an isolating feeling to look around at people who aren’t counting, who aren’t calculating, who are biting into random food without, it seems, a care in the world.
Once I trust that they understand these things about me, I feel pretty safe with them.
It’s pretty cool that they care enough to even try to understand. (If you didn’t have to know about diabetes, would YOU?)
