November is diabetes awareness month, and I figured maybe I could talk about it.
My best friend has type 1 diabetes (T1D). She is a wonderful, delightful, smart, funny, generous, intelligent young woman who happens to struggle with her health a lot. And I really mean a lot. I can't speak for her because well, I'm not her. But I can speak for me, who sees every single day the damage done by T1D.
First a recap. What is T1D? It's when your pancreas doesn't produce insulin, because it's basically dead. It's being part zombie and doing the work of an organ manually, when possible with the help of pumps and sensors. So it's also being part cyborg. Which is pretty cool, until you realise that this illness actively damages all the organs in your body. Hence kidney failure, blindness, limbs amputation and so on. Insulin is what helps your body process fat and sugar, and the lack of it causes the levels of glucose in your blood to reach ridiculous numbers, both high and low. Too high or too low and you can go into a coma, or die. Less cool.
What I want you guys to know first and foremost is that people with type 1 diabetes are simply unlucky. They did nothing to have this illness. It's not the food they ate, it's not a lack of exercise or fresh air, nothing. All they did was exist and then suddenly they were sick. And it can affect anyone.
My friend was diagnosed at 3 years old. Do you remember being 3 years old? No? Of course not, the first memories normally appear between 4 and 5. She, however, remembers when she was diagnosed. Because it meant that life as she knew it was over. It meant that for years she had to prick her finger to check her blood sugar levels multiple times a day, until she got the tech that monitors it for her. It also meant she had to count carbs in all that she ate, so that she would know how much insulin she needed for every meal. Still does. It meant from that time onwards that she would never get a full night's sleep.
And neither would those who care for her. I live on the other side of the world so our sleep schedules overlap and I am usually awake when she wakes up in the middle of the night because her pump beeps. But her boyfriend, her parents, the friends she sleeps over at, they get woken up by the same beeping. And each of us get worried when we hear that dreaded beep.
Because any low can be the last low. Any high can be the last high. So she needs to take care of her blood sugar level whenever her pump beeps for a high or a low, which is often.
That means there are things she can't do, or needs more preparation for. She can't just up and decide to go for a walk. What if she gets low? She needs fast sugar with her. What if her number gets high? She needs to make sure she has insulin on her. What if her kidneys start hurting really bad and she can't walk? She needs someone with her, or someone to call to come get her.
If you think I'm exaggerating, let me give you an example of a time she needed someone with her. One night, she called me. Her blood sugar was ridiculously low, and she was laying down on the ground in her kitchen, and she couldn't move. She could barely talk. She was alone. I remember that night all too well. I remember thinking that if she fell asleep it was over, and I was too far to do anything. I can't even call an ambulance for her from here. So I kept her awake, for 2 hours. I talked, I made her smile because she was too weak to laugh, I made her talk as much as possible, all to make sure she wouldn't fall asleep right there on the carpet. Later she told me if I hadn't picked up she would probably be dead.
That is a common thing for diabetics. We were lucky that I could pick up, that she could still call, that she didn't fully fall asleep. It was one of the most scary moments of my life. But what if I hadn't been there that night? So many people with type 1 diabetes die because they're alone. Because they can't reach the fast sugar, because they don't have enough insulin and the pump doesn't wake them up.
And so many die because they can't afford the fast sugar, and most often the insulin. That is why insulin should be free or low cost everywhere. And that is also why T1Ds should be liable for disability the moment they get diagnosed. Because their life is terrifying enough without wondering everyday if they can afford the very things that keep them alive.
Another thing we don't talk enough when it comes to diabetes is the depression that way too often comes with it. The burnout. The exhaustion. Because having to do the job of a whole organ by yourself is hard. So very hard. And people don't understand why you're constantly tired, why you don't get out more, why you don't party like they do. But if you haven't had a full night's sleep for years, of course you're going to be exhausted. If your kidneys are hurting, of course you won't want to go out and party. If alcohol makes your blood sugar levels whacky, of course you won't want to drink it.
Most people say they understand and will be supportive, but after a while they get bored or tired of the hardships that come with being friends with someone who has T1D, and they ask for a break. Or they simply leave. How often has my friend asked me if I needed a break from her health issues? But I don't. I understand that it can be a lot, but she isn't ever tired of hearing about my issues, why would I not return the favour? And besides, she always manages to make me smile through the worry and pain of seeing her health declining. She doesn’t get a break from her health issues either. Can it cause burnout in those caring for her? Yes, it can. Does that mean we have to abandon her? Not at all. It’s easy to say “look, I’m exhausted today, can we talk about this tomorrow?” It doesn’t take much effort to be empathetic and understand that she needs to air her frustration sometimes.
She cracks jokes about kidney failures. About death. Because it's all part of her life and she is so used to it. She says a lot of people don't get her humour, but I get it. If you laugh at something it loses its power. It's her way to reclaim the life that this illness is trying to steal from her. It’s her way to fight the constant fear and depression that have become part of her daily life. It’s her way to stay strong, for us.
She is a little sun, so bright, so light, so brilliant. She makes my life a hundred times better and all I want is to see her smile. I know now how hard this illness is on her, and I admire her bravery and her resilience in the face of it. Her open mindedness and her generosity. Her will to always do good around her, to always be there for people, to always help. Her caring. She's the most caring person in this world. She cares about you, and I hope from now on, you'll care about her and people like her too.