1. Health insurance woes and worries
I always feel obligated to preface my complaints about health insurance by saying that I’m grateful to have it. People with diabetes who don’t have health insurance struggle to get their minimum health needs met. Because diabetes is such a costly disease to manage, particularly for people on insulin, many people without health insurance end up cutting corners. I do cut some corners to save money, but I know I’m in a much better position than a lot of other people, and I thank my lucky stars for that.
That being said, I think we can all agree that health insurance is for healthy people, not people with diseases who most need it, so when you have a disease, health insurance is a major source of unlimited grief. Health insurance companies will have you pulling out for hair, inventing curse words, and having complete meltdowns.
I know the customer service rep on the other end of the phone line isn’t responsible for their crappy policies so I do feel terrible that I freak out on them. It’s the board members, CEO’s, CFO’s, the big wigs, the people setting policy that I hate. It’s our economic and political system that coddles those greedy jerkfaces. I hate them all, and I wish awful things on them – hydrogen bombs, plagues, John McClane, zombies with a specific taste for health insurance company executives’ brains. I was going to say aliens that rip out and feast on human hearts, but the poor aliens would starve to death if their sole source of nourishment was health insurance officials…*ba-da-bump*. More fitting would be slow torturous deaths while on the phone with their own customer service departments, begging for coverage for medication, supplies and services they need to live with diabetes. Now that would be karmic retribution.
2. Sweaty lows, nauseous lows, befuddled lows, nocturnal lows, unconscious lows, topless lows…
Having low blood sugar sucks. You can’t process information, you have to stop and wait for your BG to get back to normal, sometimes you’re so hungry you end up overeating and then you feel like crap later because your BG soars. It stops you in your tracks, and in turn, often inconveniences others. It makes you feel helpless and frustrated, and it can be really frightening for people with diabetes and their loved ones. It interrupts anything and everything. Hypoglycemia is a disaster waiting to happen at any given moment. The fact that it can easily kill you brings me to the next thing I hate about diabetes…
3. My pathological fear of dying
I think about dying a lot. It terrifies me because I feel like it follows me around like a shadow, waiting for an opportune moment to swallow me whole. Death is an obvious inevitability for everyone, but knowing that my life expectancy is already shriveled because of diabetes freaks me the heck out. I go to bed at night, hoping I won’t die of a heart attack or hypoglycemia or dead-in-bed syndrome, hoping I’ll wake up in the morning. I worry that every little physical anomaly is an early sign of a heart attack. I hate that it concerns me as much as it does, I hate that I think about it as often as I do, I hate that it scares me to such a great extent. I especially hate that people my age without diabetes have the luxury of looking forward to life’s milestones, while all I can think about is gravestones. I know thinking about it now is a waste of time and energy, but I haven’t figured out how to make peace with it.
4. Food and eating is so complicated
I absolutely despise having to eat when I’m full, but sometimes my BG gets low after meals because I take too much insulin. I hate that when my BG is high, I feel like I shouldn’t eat certain things or shouldn’t eat at all. I hate that eating fun stuff like chocolate or ice cream or cookies is a bad idea for treating low blood sugar, and instead I have to drink juice or eat glucose tabs or hard candy. I hate that diabetes makes it nearly impossible to have a purely joyful experience of eating delicious food because before or after or even between bites, I have to think about how it’s going to affect me, what my BG is, and what my BG might do in response to that food. I hate that I have to play pancreas instead of just savoring what I eat.
5. Thinking about it every other minute
This is not much of an exaggeration. No matter what you’re doing, where you are, how you feel, who you’re with, what occasion it is, what time zone you’re in, what hour of the day it is, how tired you are, how busy you are, how emotionally drained you are, you have to think about it. Where’s my meter? What’s my BG? Do I have enough test strips? How many carbs are in that? How’s that going to affect my BG? Why is my BG low? Why is it high? Why won’t it come down? Why won’t it come up? Did I bolus? Did I over-bolus? Are my basal rates correct? Do I need to do basal testing? Did I refill my prescriptions? Do I have refills on my prescriptions? Do I need to get labwork? Do I have lab slips? Where did I put my lab slips? When is my doctor’s appointment? Did I make that appointment? Do I want to keep seeing that doctor? Are my co-pays going to change? Is my insurance going to change? Am I going to lose my insurance? How am I going to pay for all this stuff? Why is my BG still so high? Did I check my feet? Are those shoes going to cause problems? Why is my vision blurry? Why did my foot fall asleep? Do I have glucose tabs or juice with me? Will they discriminate against me? Will they ask me annoying questions? Will they treat me differently? Should I even tell them I have diabetes? Where should I put my pump? Where should I put my CGM? Can I find a handbag that will hold all my diabetes crap that isn’t as big as a suitcase? Does that dress have pockets? Should I eat dessert? Should I have a glass of wine? Should I adjust my basal rate? Did I reattach my pump? Why the frik is my BG still so high?
Why am I depressed? Oh, maybe it’s because I’m constantly thinking about this crap.
6. Feeling like a burden to everyone
I vaguely recall having an exchange with a parent of a D kid who said they make sure they don’t let on that their child’s diabetes is a burden. I told them their kid knows, and their kid feels guilty. She disagreed. When I was a kid, I felt like a burden to my mom, and I felt guilty for it. I think most adults who grew up with type 1 will say they had a similar experience. Feeling like a burden has eaten away at me for as long as I can remember. Now I’m a burden to my husband. Having diabetes is a burden on the people who love you, no matter what type of diabetes, no matter how old you are, no matter how long you’ve had it. There’s just no way around it. I know people put up with diabetes because they love us. I know having us in their lives with diabetes is better than not having us in their lives, but I despise that it affects them as much as it does. I hate that they worry about us dying, having low or high blood sugar, developing complications, or any of the million things that cause worry for people and families with diabetes. My guilt is irreconcilable.
7. Mental illness
Depression runs in my family, so I can’t fully blame diabetes for this one. However, I do give diabetes a whopping credit for my depression. Diabetes is depressing, diabetes is a burden, and diabetes causes guilt, self-consciousness, anxiety, anger, hesitation, worry, fear, embarrassment, and a range of experiences and emotional states. It takes its toll on people’s psychological wellbeing, and many of us experience depression at some point in our lives.
While depression is common amongst people with diabetes, there are other mental illnesses that as associated with diabetes. Diabetes really complicates our relationships with food and our bodies, and for some, that can lead to an eating disorder. For people with type 1, especially young women, insulin omission is far too common, but for some people with type 2, binge eating disorder is a significant issue. People with mental illnesses characterized by psychosis are often at risk for developing type 2 diabetes because of the medications they take to manage their mental illness.
Mental illness of any kind is difficult. Diabetes of any kind is difficult. Having both is that much more difficult.
Diabetes is with you all the time, so you can close and lock the bedroom door all you want, it’s following you in there. And it’s not just going to sit quietly in the corner, or even wait patiently on the nightstand while you do your thing. It’s getting into bed with you and snuggling up. It might beep, it might vibrate, and not in a helpful kind of way. It might interrupt and turn your lovemaking into a picnic for one of juice boxes and glucose tabs. It will have you wondering if you can keep going for just a few more minutes before you have to tap your partner and tell them the festivities will be ending early. It might even make you pass out, also not in a good way. It will never let your thoughts stay sexy because it will interrupt with worries about your pump site, CGM, BG, or how many carbs were in those edible undies. Basically, diabetes doesn’t want you to have a fulfilling sex life, but don’t stop trying!
Most people talk about The Big 3: retinopathy, nephropathy and neuropathy. Those are definitely scary. After all, who wants to go blind, lose their kidney function, or get their feet chopped off? There’s so much more to it than that though. First, the number one thing that kills us is cardiovascular disease, so I’ve already placed bets that a heart attack or stroke is going to be get me in the end. Beyond those biggies though, there are so many other things that can happen as a result of diabetes.
Diabetes damages the microvascular system, and that means every system, every part of your body is at risk. Most people tend to think pretty exclusively of peripheral neuropathy, but that autonomic neuropathy is nothing to sneeze at. It can damage the heart, any part of your gastro-intestinal tract (diabetic diarrhea anyone?), your sexual function, and whatever else your autonomic nervous system controls.
Then there’s the stuff no one mentions until you’re at the doctor asking about some seemingly oddball problem. I have diabetic mastopathy so I have weird boobs. I’ve had frozen shoulder in both shoulders and both hips, and from what I understand, frozen shoulder can affect any joint. Within the last six months, I was diagnosed with carpal tunnel syndrome, and now I have to wear ugly braces on my wrists when I sleep. So complications can kill or disable you, but they can also adversely affect your quality of life by being a perpetual nuisance.
Do you ever get angry about having diabetes? I spent years taking my anger out on myself because I had so much of it and didn’t know how to constructively cope with it. After lots of therapy, support, and gaining some perspective, I still have an occasional moment, but most of the time, I accept diabetes for what it is, and try to focus on more positive things.
Sometimes though, the anger rises to the surface. The problem with diabetes anger is that there’s no one to yell at, no one to beat up, nothing to blame. Even after you have a monumental breakdown, one that makes you think you’ve gotten all the anger out of your system, the anger never really goes away because diabetes is always there, poking, prodding, instigating. It tends to be unpredictable, uncooperative, incorrigible, unforgiving, and relentless, so even if you feel OK about diabetes right now, just wait because like a fault line, it’s going to slip, and the anger will bubble to the surface yet again.