Whether you're a loved one, friend, or struggling yourself with this disease, the type 1 world can be confusing, frustrating, and downright hard to be a part of. Information is confusing, and the disease itself can feel stigmatizing and isolating...which leads me to my first point.
1. Type 1s often lack community (especially adults). Have cancer? You can find about a million facebook groups, support groups at local hospitals and treatment centers, 5k races, chat rooms, and other methods of community, all organized around the idea that "we can fight this together!" But with Type 1s? Good support groups are out there, but they are hard to find, and largely organized around caregivers of T1s. And if you are struggling yourself with it as an adult, the community options are even smaller, because T1s don't have any hope for a cure. While cancer can go into remission through various treatment options, T1 is a 24/7 disease that requires constant monitoring, and there's little hope for a true cure, which always seems "ten years away..." This creates despair and isolation, and before I created the Facebook group Type 1 Diabetic Adults, I couldn't find one group dedicated to T1s themselves.
2. It's no longer considered "juvenile diabetes." Because adults can get it too, I'm one of them. It was originally labeled that before there was a real understanding of what caused it in children. Now they know T1 to be auto-immune, and onset can happen at any time. Despite that, many T1 adults get misdiagnosed T2 at first, only to land in the hospital when diet and exercise don't calm their high sugars. The more we can eradicate this misnomer, the better for us all!
3. We live in a Type 2 world. I was surprised at the lack of knowledge people had about type 1. Before my diagnosis I'd known about T1 and the differences between that and T2, but since diagnosis I've realized that many people don't. Commercials, public service announcements, media...they all talk about T2 diabetes. I even saw a news story recently about T1 research for a cure and at the very end they panned to a video of overweight adults. The newscasters themselves didn't know the difference between the two and those are the people educating the public at large! *facepalm*
4. Type 1s can be overweight. Most posts like these include that T1s don't necessarily look like diabetics and are thin, and while that's often true, some are overweight. T1 is an Auto Immune disease and many of us have other diseases that can affect our weight. We need to stop body typing and going on blood tests like Anti-Gad and C Peptide instead--we'd have far fewer misdiagnoses this way!
5. Onset is often slower than you might think. Research shows that some children diagnosed with T1 actually started showing signs that went unnoticed years before their diagnosis date. While many children and adults are diagnosed after traumatic events or other illness, there is research that onset can take years. If your child or loved one shows signs such as sluggishness, frequent illness, lethargy, thirst, or hypoglycemic episodes, see your physician as soon as possible.
6. You have to be your own advocate. The truth is there is new research on Type 1 happening all the time, with new and innovative treatment methods and medical devices. Doctors don't have the capacity to keep up, so research your disease, read medical studies, and keep up to date with technology. Don't rely on your doctor to know the newest and best treatment methods---rely on yourself. Read diabetes blogs, get on newsletters, get in community, and read all you can---then ask your doctor about them.
7. Know your own body. YOU (or your loved one) deal with this on a day in/day out 24/7 basis, therefore you should start noting patterns, and tweaking treatment on your own, because the reality is your doctor can only know what you tell them at your visit every three months (or however often you go.) You are in charge of your own wellness because only you can spot the patterns and shifts that happen throughout the day. If you are new, please consult your physician before making any major changes, but as you get experienced you'll realize that the necessity to take charge of your own disease is paramount.
8. You will be misunderstood. "Can you eat that," is the most common question a T1 will ever hear, because people don't understand the differences between Type 1 and 2 and or what causes them. Other questions include..."Have you heard about this new cure" (insert cinnamon, pickle juice, or unicorn pee...), the world is always trying to sell us some new natural cure. The good news is you can kindly educate those around you and the more you do, the more misconceptions you'll be able to confront!
9. A CGM (Constant Glucose Monitor) really is your best friend. Honestly, this little device saved me. Instead of taking out my kit to check 6-8 times a day, I'm able to see my trends in almost real time, so if I'm in a meeting or appointment and going high or low, I can treat it right there (thank you pump therapy) without anyone really noticing.
10. A pump is your other one. If you are a busy adult, the pump is your other best friend in this disease. In a meeting and trending high? With the push of a button, you can discreetly treat yourself without interrupting anything or walking out of the room, or having to explain why you are getting out that pen or syringe. It keeps me feeling like a semi-normal person, which helps my sanity because..
11. This is a 24/7 disease. There is no break. I've thrown fits and chosen not to treat, only to end up sick and wondering, "why'd I do that again?" The trick is to find things that work for you, that will make life easier. Work smarter, not harder! The good news is there are so many tools, devices, apps on phones, and other things that do make like with T1 easier.
12. Seek out community. Just because it's not easy to find, doesn't mean that you don't look for it. When I saw there were no adult T1 groups on Facebook, I changed that and created my own. You can too. You can contact your local endocrinologists and see about starting a support group, you can seek people out on facebook or other websites, you can go to Diabetes retreats which do in fact exists! If you are a caregiver, there are sites for you too, and camps to sign your kids up for! Community has been my lifeline and it will be yours or your loved ones too. There may be no cure, but that doesn't mean we still can't fight and overcome this together. Overcoming just means something different to T1s. It means learning to live life as normally as possible without letting this disease define or limit you. That's my ultimate goal, and to do that you need others who get what you are walking through.
13. Seek out emotional help. Whether you are an adult with T1 or a caregiver/child, you'll need emotional help navigating this disease--grieving it, and grieving that life will look a bit differently. Grief has 5 stages including anger and depression, and it's okay to let yourself go there. What's not okay is to stay in those places and get stuck. That's when you need to reach out for help. Diabetes Educators are not only great tools for treatment, but many have T1 themselves and can offer advice and an ear. There are also many counselors who would be happy to walk you through grieving stages and come up with helpful ways to be an overcomer. Seek out friends, especially other T1s who could serve as sounding boards and safe places. Basically, you are NOT alone in this. If you need help, ask for it. Caregivers, spouses, this goes for you too.
14. You are at risk for other diseases. Associated AI conditions of T1 include Celiacs, Addisons, and Hashimotos. T1 is an Auto Immune disease, and AI diseases are often systemic, attacking more than just one organ. Which leads me to...
15. Build a treatment team. You need a good endocrinologist for basic treatment, but you'll also need an opthamologist, a podiatrist, a Diabetic Educator or nutritionist, and (see above) probably a counselor. Not too mention a good personal support system.
16. This isn't the end. While I won't tell you to make lemons out of lemonade, I'll say that while diagnosis with T1 changed the way I do life, it didn't end it. I know it feels like that, and it might for awhile as you grieve (caregivers and spouses too), but eventually you get in a routine and find what works for you, and there are days that you might actually feel normal!
Ignorance, despair, and isolation are the enemies of every T1 so do your research, connect with others, and build up a support system. There are great blogs, books, and communities out there that will help you on your journey through this mad world.
