Having been diagnosed with type 1 diabetes at age 22, I was thrust into a whole new world in my already established life. I was married, freshly graduated from college, working as a low-level manager at a big box store. For those first 6 months or so, I was completely on my own in this new reality. Any time I tried finding info on what to expect as a newly diagnosed adult T1, I’d only be able to find things parents had written about their newly diagnosed kids, or adult T1s who had been diagnosed as kids. There are so many things I wish I would have known, so I’ve compiled them into this list.
This is going to sound kind of ridiculous but it’s important. The sooner you can reach acceptance over the fact that your body went rogue and killed part of itself, the better off you’ll be. I struggled with body image and general body acceptance after diagnosis. You’re going to gain weight when you take insulin. You will have bruises and scars from injection sites. You will get weird looks for your insulin pump / CGM should you choose to use those items. Being confident in yourself will be so vital to happiness and success post-diagnosis. Embrace your body.
If you’re a woman, you’ll have the disadvantage of having limited places to store your diabetes items on your person. Good luck finding dresses, skirts and slacks with pockets. However, you do have two advantages over the men: 1) purses. I feel bad for my male counterparts who must carry man-purses for their d supplies. 2) boobs. They’re a great place to store your insulin pump!
Don’t let anyone tell you that you HAVE to use an insulin pump or CGM. Those are great tools but they are NOT necessary for survival. I was on injections for my first year as a type 1 and I feel like it was a great learning experience. I personally prefer using a pump, but everyone is different and that’s okay!
If you do decide to get a pump or CGM, don’t let your endo bully you into a specific one. (actually, don’t let your endo bully you into ANYTHING. If your endo is trying to make you do something you don’t want to or don’t agree with, get a new endo). The Internet is a wonderful resource and there is TONS of information out there on each pump and CGM company. I read numerous reviews before I selected my pump and I’m happy with my decision.
Keep a juice box on your nightstand. Warm juice at 3am is better than stumbling around your house in the dark in a low daze to get a cold one from the kitchen.
Also on that subject, make sure you rotate your juice boxes. Check the expiration dates. Moldy juice will probably still raise your blood sugar but I can only imagine the consequences of drinking it. Being highly allergic to all types of mold, this is hugely important to me.
Teach your coworkers (and anyone else you spend a lot of time with) about diabetes and what to do. Volunteer to demonstrate different aspects of what you do for them so they become more comfortable with you testing, bolusing, etc around them. Even more importantly, teach them what to do in an emergency. Teach them how to administer glucagon, where you keep emergency low supplies, what the symptoms of highs and lows are, who your emergency contacts are, and so on.
You are your own best advocate. Waiters and waitresses will (probably unintentionally) try to kill you. Learn to differentiate between diet and regular soft drinks if you’re a pop drinker. They will get mixed up and serve you the wrong one. Pay close attention (in the case of the photo above, the waitress refilled my glass from a pitcher, and refilled my friends glasses with the same pitcher, and I knew they had been drinking regular). Don’t get angry at them, but be firm that you need your drink to be diet.
Diabetes is expensive. You may have to change your type of care, medical supply company, endo, etc based on what your insurance allows. You may even have to consider changing jobs based on what insurance benefits are offered.
Misconceptions are rampant. Knowing facts and having references for those facts is something I strongly recommend. Most people don’t intend to be malicious or offensive, they simply believe they have knowledge that is unfortunately the product of many years of generalizing two very different types of diabetes under one name. Also, having the ability to discern when to argue and when to let things go is important. Try to greet every question and statement as an opportunity to advocate and educate rather than debate and humiliate.
No matter how great of an advocate you are, some people will still not understand why you do what you do (as I outlined in this blog post). Friends and family will pull away and drift out of your life because it is too intense for them.
Unfortunately, that’s normal. It is what it is. And speaking for myself here, if those people can’t handle my life, then get out. There are others who can and do with grace. I’m so appreciative of those who have shown an interest in type 1 diabetes, advocated on my behalf, gave me candy for a low without question, driven me home on my lunch break so I can do a site change, held onto whatever I had in my hands so I could test my blood sugar, asked me if I wanted to partake in enjoying cake with everyone else rather than assuming I wouldn’t want to or couldn’t, and so many other things.