Happy (?) World Diabetes Day!
Hi!
It is World Diabetes Day! I wrote all of this because it's one of those diseases that so many people kind of think they know all about. Most of this so-called knowledge gleaned from 3-minute evening news segments amounts to: "Fat people get diabetes. Sad."
Here's what I can tell you about my experience
I have type 1 diabetes, sometimes referred to as “juvenile diabetes.” I have a form of it called LADA: Latent Autoimmune Diabetes of Adults. Basically, my body has been attacking my pancreatic cells slowly over time vs the super-fast-in-childhood way that type 1 often presents.
It’s an autoimmune disease, and as is the case with many autoimmune diseases, there’s still a lot that science doesn’t really know as far as what triggers it in some people. There is often a genetic factor for the kind that comes on fast, but not as much with LADA for some reason. As far as I know, I don’t have type 1 in my family. But, I also don’t know my father’s side of the family very well, so maybe I do!
What it is:
- You can get type 1 at any age. It is most typically diagnosed in childhood through early twenties, but not always and not with LADA. I personally know three people just in the writing world who, like me, were diagnosed in our thirties and initially mis-diagnosed as type 2 because of our age and other factors.
- I have to inject insulin to stay alive. A healthy pancreas makes insulin, and insulin is the hormone that helps the body store and use glucose. Insulin can be delivered via a syringe, an “insulin pen” (which is really just a fancy syringe), or a pump. There is no pill. If you “have a friend who takes a pill though," that pill is not insulin. Shots aren’t that bad. The needles are very thin, and the injection is subcutaneous, meaning just under the skin. You are not going into veins. You can inject in your stomach, your sides, your lower back, your upper arms, your outer thighs. Insulin-dependent diabetics get very creative about injection sites and how to pull it off in public. I can often inject at a table in a restaurant and the people I’m eating with have no idea. (This is one reason I always ask for a booth. It’s easier to be discrete about this in a booth than at a table.) When I’m wearing my pump, I pull out the controller and people might think I’m rudely looking at a phone or other device while we’re out to eat but really I’m just programming my insulin.
- Being fat did not cause my type 1. In fact, at this point it’s more that type 1 is what makes it hard for me to lose weight, because I am injecting myself with an energy-storage hormone multiple times a day. Being fat is also why I was initially misdiagnosed as type 2, because as all fat people know, doctors make a lot of assumptions based on weight, and a lot of them can have trouble seeing past your body weight to other potential causes of a health issue. Being misdiagnosed is what made me thin in that 2009-2011 time period, because I was an undiagnosed type 1 and my body could not store or use energy/calories. For a long time, I lived on my fat stores. When those got depleted, I started feeling worse, and in 2011 I found a better doctor, asked for the GAD antibody test, and got the correct diagnosis. I started insulin in late 2011, and my old, empty fat cells were just waitin’ to be filled up again, wheee!
- Speaking of fatness, let me divert to type 2 for a moment. I learned a lot about type 2 because for two years, that's what I thought I had. The main thing I want to say is that not all fat people have type 2 diabetes, and not all people with type 2 diabetes are fat. You would never guess this by watching the news. Type 2 is a complex disease that involves genetic factors, lifestyle factors, and--as we are learning more and more--environmental triggers, many of which are yet unidentified. Jokes about eating a lot of sugar and "giving yourself diabetes" or about fat people and diabetes are uninformed and not funny to actual diabetics.
- A very brief and incomplete primer on the difference between type 1 and type 2: type 1 is an autoimmune disease where your pancreas stops making insulin because the body has for some reason decided that pancreatic cells are the enemy and they must be attacked. Type 2 is not autoimmune, and usually has to do with the body’s inability to efficiently use the insulin it is making. Some type 2 people have to inject insulin, especially if they’ve been type 2 a long time and the pancreatic cells just sort of “burn out” (not a scientific term). All type 1 people have to eventually inject or pump insulin.
- Insulin is very expensive in the United States. About 5x what insulin made by the same companies and sold under the same names costs in other countries. This is a problem. If you have good insurance, it’s just barely affordable, but otherwise it can be a real hardship, and it’s not optional. There is a campaign called #Insulin4All involving attempts at trying to remedy this, because there is no reason other than corporate greed that insulin needs to be so expensive.
Some stuff about what it’s like to live with type 1 diabetes on a daily basis:
- I never have the option of not thinking about it. As you may have noticed, food is a major part of everyday life. Every type 1 is engaged in a constant thought process of balancing food, insulin, and exercise in a way that avoids getting dangerously low or dangerously high blood sugars. Type 2s also have to live with a constant awareness of food and blood sugar, though the complications introduced by injecting insulin ratchet that up...
- ...because: dangerously low blood sugar, the kind that can come with taking external insulin, is *really* dangerous. Not to alarm you, but any given night if I get that balance off and take too much insulin, I could die in my sleep. I know this sounds kind of dramatic, but it is the truth. I got a thing last year called a Continuous Glucose Monitor (CGM) that is attached to the outside of my body that gives me a blood sugar reading every 5 minutes and sends it to my phone. This is a blessing and a curse. It will alarm me if I drop too low and help keep me from dying. Blessing!!! But also I am constantly aware of my numbers, and this creates a lot of anxiety, and also guilt because I want to be a Good Diabetic and I want to have Good Numbers and therefore be Good and be able to tell myself, “Sara, You Are Good.” I get better and better at not seeing the numbers as a judgment on my character, but it’s hard. Curse.
- Long periods of high blood sugar are also dangerous and can lead to death. Not as suddenly as a really bad low, but still quite quickly through a process called diabetic ketoacidosis, or DKA. DKA on the high side and insulin shock/death on the low side are two big fears that we just kind of live with. Technology like the CGM and some newer pumps that auto-adjust based on CGM readings help a lot with this.
- Diabetics, like anyone who lives with a chronic disease or condition or difference, are more prone to depression and anxiety. On top of all the usual life bullshit, we are always also dealing with the layer that diabetes adds. Also if you are already more prone because depression just runs in your genes, like in mine, it's just double-double exacerbated.
- We can also be more susceptible to eating disorders, especially women. We have all the issues that make all women vulnerable to ED, plus the factor of a basically necessary/life-saving “obsession” with what we’re eating. Young women who gain weight when they start insulin injections can struggle with something called "diabulimia," which is intentionally not taking needed insulin to avoid weight gain, and this can lead to complications and, eventually, death.
- Exercise also effects all of the low/high worries, and sometimes I have to turn down spontaneous walks or long hikes or other activities because my blood sugar has been low or volatile and I don’t want to be going up a mountain and then having to stop everyone while I drink a juice box or eat glucose, etc. I can’t just throw on a jacket and some shades and go. I always have to have my stuff with me to deal with a low or a high.
Some stuff that might annoy or anger or frustrate T1D folk
- Asking: “Can you eat that?” Yes. I can. I can eat anything I want, depending how much insulin I want to take and how willing I feel to deal with potential highs later on. Should I eat that? Maybe, maybe not, but I’m 47 and that’s my business, not anyone else’s. It's important for us to feel like we have choices, and the tools to deal with our choices. "Can you eat that" is infantalizing and, honestly, just kind of rude. Imagine that every time you partake of food with a friend or family member, they ask if you should be eating something. It really makes you look forward to spending time with them, doesn’t it?
- Relatedly: making assumptions about my diet. I’ve turned up to dinners or events and had people say, “I made you a sugar-free cake!” Which is not a thing I eat. Or, “I got this diabetic recipe online and cooked it for you,” which is a nice impulse but there’s no such thing as “a diabetic recipe.” Some of us low carb, some do high carb plant based, some try different things at different times, some just eat whatever is served and adjust insulin accordingly, whatever. You can simple ask, “Any dietary preferences or allergies? Anythng you’re not eating?” like you probably would with any guest.
- Sharing “information” you “heard on NPR” or “read in Parade”. Eat cinnamon. Go paleo. Take fish oil. Try fasting. Go vegan. Bulletproof coffee. Green tea only. Sure some of those things might actually be useful, but I promise we have already heard of them, and, you know, just don’t go around advising people on how to manage conditions they live with every day and you don’t. (General life tip: unsolicited advice is just not a good way to relate to people, period.)
- “Are you going to go blind eventually” / “Are your feet going to fall off” / etc. I DON’T KNOW THANKS FOR ASKING. Long-term complications are a real thing and we do our best to avoid them, but how do you expect people to answer questions like this, really.
- “Can’t you just…” Anything that follows that or a form of that… no. I can’t just. “Can’t you just not eat carbs?” Yes, I can not eat carbs, and I often don’t eat carbs, but I still have to take insulin. Eventually the body turns everything or at least part of everything we eat into glucose. Protein and fat affect blood sugar, too. “Can’t you just exercise a lot?” Sure. Still not a cure, still have to take insulin.
- If you are a close friend or family member of any kind of diabetic, it would be awesome if you educated yourself about things like what type 1 (or type 2) diabetes is, how it is different from the other type, what it takes to live with it, the kinds of things I might be dealing with hour to hour in terms of the insulin/blood sugar management. I’m often a bit stunned about how little some of my friends really get, or what they forget, or what they misunderstand. I get the feeling some of them still look at me and their brains reflexively go: “She’s fat, so she has type 2, I know all about type 2 because my grandma has it, don’t offer her pie.” (For the record I don’t really like pie, but you see what I’m saying here.)
There is probably more. I know there’s more, because I'm already thinking of other stuff, but this Letter has surpassed Tiny and I have errands!
Every month or so I have what I call a Diabetic Meltdown. It means I get submerged in thoughts about how I have to live with this forever, I’ll never again in my life be able to eat without juggling all these factors, I’ll always have to inject insulin, I’ll never get to be “normal” again, I’ll never get to just go for a hike and trust nothing severe is going to happen to my blood sugar, I’ll always have to figure out how to come up with enough money to pay for my insulin. It’s not fair, why me. And on really bad days, “I’d rather just be dead.” It’s not suicidal ideation, but it is a feeling of hopelessness at the prospect of living with this overwhelming thing every day. I have a good cry and I get up and I get back to it, but for some of us it's not that easy, and we're walking around in a state of always being in a battle with our bodies and biology. It's tiring.
On a final note: whether you are a parent or just you, it’s good to know the symptoms of diabetes
These may be symtomatic of type 1 or type 2 (but usually the weight loss one is more likely type 1).
- Unexplained weight loss. (This was tricky for me because I was always trying to lose weight so I was just like…cool! I’m eating a lot but I’m still losing weight!)
- Extreme thirst (Like, EXTREME. I remember being in a grocery store and having to drink a bottle of water off the shelf while shopping then taking the empty bottle to check-out, then drinking more on the way home.)
- Changes in vision / blurry vision
- Yeast infections
- Frequent urination
- Gestational diabetes. Women with GD are at higher risk for both types
- A general sense that something is off: fatigue, mood swings, a gut sense that something is not right with how your systems are operating. That gut feeling in combo with any of the above is a good thing to pay attention to.
If you experience these and you are older or heavier, and your doctor automatically says “type 2” but that doesn’t seem right to you or you eventually stop feeling better even after making lifestyle changes, please ask for the GAD antibody test. It could save your life.
Thank you for reading. More here about the goals and mission of World Diabetes Day.