So you, or someone you love, just got diagnosed with type 1 diabetes? The type where you’re suddenly facing a lifetime of injections because the immune system wiped out the body’s ability to make insulin?
It may seem like the end of the world, we get that. But it’s not. It’s just the end of one way of life and the start of a new one. A new way of life, that — once you adjust to, and learn what to do — can be healthy, happy and long.
To get you started, we’ve compiled this essential Starter Guide to Type 1 Diabetes:
This is not a medical text, but there are a few science-related things you need to understand about how the human body works to understand type 1 diabetes.
First, all cells — from a nerve cell in your brain to a hair cell on your big toe — run on sugar. That’s what cells “eat” for energy so that they can do the work they’re designed to do.
The body’s digestive system converts food and drink into sugar, and delivers the sugar, called glucose, to all parts of the body using the bloodstream. This process is regulated by the hormone insulin, which is made by the pancreas. In type 2 diabetes, the body can’t use the insulin that’s made in the normal way — so changes in diet, activity, or a wide variety of pills can make up the difference.
This is not true of type 1 diabetes. In type 1, the immune system attacks and kills the cells in the pancreas that make insulin. Therefore to survive, insulin has to be “artificially” introduced into the body in some way.
If you’ve just been diagnosed, the autoimmune attack process many not be quite complete. Rather morbidly, this is called the “honeymoon phase” when you have some residual insulin on board. But within months, your body won’t be able to produce a drop of insulin, and without insulin injections, the body’s blood glucose levels will rise to lethal levels.
It sounds scarier than it is.
Just as breathing is automatic, in most people’s bodies, the proper levels of glucose are maintained automatically when the pancreas releases needed insulin. But in the case of type 1, this process is completely broken down. This isn’t a complete disaster. Think of it as having a car whose cruise control just broke. You can still drive the car; it just takes a little more effort.
Without cruise control, you need to look at the speedometer as you drive down the freeway to make sure you’re not going either too fast or too slow. With type 1, you need to check your blood sugar to make sure it is neither too high nor too low. Blood sugar is checked by using a “fingerstick” blood glucose meter, or more commonly for type 1s, a device called a continuous glucose monitor, or CGM.
To stick with our car analogy, you now need to use your foot to control the speed of the engine. With diabetes, the engine is insulin. Insulin can be taken with an old-fashioned syringe (unlike with many immunizations, the needles are itsy-bitsy and the shots are painless), a pen delivery device, or a semi-automated delivery system called an insulin pump.
We’ll talk more about the pros and cons of these various options in a bit, but for now just know that while you now have to continually monitor your blood sugar and take insulin as needed, at least you are in the driver’s seat.
Insulin is used to keep blood sugar from going too high, so you should take it if your sugar is above healthy target levels, or before doing anything that will make it rise.
What makes blood sugar rise?
Food will, if you eat without taking insulin before the first bite. As will any drink with sugar, such as juice, milk, many energy drinks, and any sort of regular soda. Probably the single best thing you can do to make your life easier with type 1 diabetes is to avoid sugary drinks like the plague. Other than that, little diet change is required — at least at first.
Stress can also raise blood sugar, as can seasonal allergies, and colds and flus. In fact, there’s quite a list of things that can raise blood sugar.
On the other hand, other factors, especially exercise, can lower blood sugar without the need for insulin. Exercise is first on that list, as it raises the body’s need for fuel, burning off extra sugar. That’s not to say you can simply exercise your diabetes away, but it can be a very useful tool.
How on earth do you learn how to juggle all of this? With the help of a team.
Luckily, you’re not in this alone. There are many medical professionals trained specifically to help you learn how to navigate and manage type 1 diabetes.
Two key members of the team will be your diabetes doctor, and a specially trained diabetes educator who will teach you the art of diabetes management.
Doctors who specialize in diabetes treatment are called endocrinologists, and it’s important to find one who is a good fit for you. You can start by searching a database of these specialists to find some in your area. You’ll have to call around to find out which ones are covered by your health insurance. And then to further narrow your search, you can peruse online comments and reviews to get a sense of the doctor’s style, and think about how that style might mesh with your personality. Do you need someone who will treat you with kid gloves, or do you need a firm hand at the helm?
The endo will be in overall charge of your treatment plan. He or she will meet with you, study your blood glucose patterns, and help you choose the right technology and delivery devices for your lifestyle. The endo will also order and review lab tests and may send you to other specialist doctors as needed.
Most people with type 1 diabetes should also be under the care of an eye doctor, as there is a risk of eye damage from elevated sugars. You’ll also need a good dentist, and sometimes a heart doctor or kidney specialist as well — depending on your overall health.
The diabetes educator is a specially trained nurse or dietitian who will help teach you all the tech and tricks to thrive with diabetes. Some educators work in the endo’s office, while others are independent.
Newly diagnosed type 1s usually spend much more time with the educator than with the endo, because the educator helps you sort out all the “logistics” of living with diabetes — from food choices to exercise routines to medication adjustments. The educator meets with you more often and has longer blocks of time available to teach you what you need to know.
Note that we mentioned “compiling” your care team. This is because it’s up to you, the patient, to find and engage with these various healthcare professionals (HCPs). In most cases, communication among them is limited — especially if they’re at different clinics or locations — so these folks are only a “team” in their shared intent to help you.
Again, we can’t emphasize enough how important it is to have a good rapport with the HCPs you choose, most especially with your endo and your educator, as they are the two with whom you will interface the most. If you aren’t “clicking” with either one, go shopping for a replacement.
As mentioned, this care team is not the well-oiled machine you might hope for. Like diabetes itself, your care team is a largely self-managed affair. You need to assemble it, coordinate it, and keep it running yourself.
As we touched on earlier, you’ll need two critical devices: one to measure the glucose level in your blood, and one to get insulin into your body.
Let’s start with that life-sustaining insulin. You’ll need two types of doses: what’s called a basal insulin (or “background dose”) to keep your glucose in check between meals and overnight, and a second type of bolus insulin (rapid-acting insulin) for meals.
The old-school way to deliver insulin is to use a syringe and vial. That said, there’s nothing old school about modern insulin syringes: They are disposable one-shot wonders with multifaceted lubricated needle tips that are thinner than the lead in the best mechanical pencil.
Insulin is injected right below the skin, into fat layers, not directly into the bloodstream. It sounds scary, and can be the first time — but it’s actually quick, easy, and painless. It’s also the most cost effective of the options.
The next option is an insulin pen, which like the name suggests, is a pen-like device that holds enough insulin for multiple days or even weeks. The pen also uses a needle — the only way to get liquid insulin into the body is to poke a hole in the skin — but one that’s attached to a small hub that screws onto the tip of the pen. The pen has a dial at the base that allows the person with diabetes to “dial a dose.”
Some pens are disposable, others are refillable, and some are even Bluetooth enabled and communicate with smart devices for record keeping.
Speaking of smart, the ultimate in insulin delivery is the insulin pump, small computerized devices that constantly drip insulin into the body through thin flexible tubing. One advantage of a pump is that you only need to use one kind of insulin for all your needs, because the continuous drip covers “basal” insulin, while you can simply push a button to deliver a bolus (mealtime) dose. Pumps cover both needs with rapid-acting insulin.
The latest pumps have various levels of semi-automation and are connected to gear that monitor blood glucose. In some cases, they can make automatic adjustments to keep glucose in target. Some tech-savvy people with diabetes have already created automatic delivery systems, coined “artificial pancreas” or “closed loop” technology, and the industry isn’t far behind.
How do these systems know what your blood sugar level is? They use CGM systems, which automatically test blood glucose every five minutes. CGM systems are also available as stand-alone devices that can communicate with smartphones to help people with diabetes who use syringes or pens.
Of course, the traditional fingerstick glucose meter — that tests blood sugar by analyzing a drop of blood lanced from a fingertip — is still an option for tracking blood sugar. But a CGM can alert you to unexpected changes in blood sugar, and they’ve gotten so good that treatment decisions can be made from the stream of continuous data coming from them.
Back to insulin for a moment: you may be wondering, why wouldn’t everyone want a pump? Well, they’re the most expensive option of the three, people with sensitive skin sometimes have a bad reaction to the adhesives needed to keep the pump connected to the body, and, of course, some people wig out at the thought of being “attached” to a medical device. All of that said, most “pumpers” swear by their devices.
Expect that four times a year your endo will run a blood test called an A1C. Sometimes it’s run at a diagnostic laboratory, other times from a fingerstick machine in the doc’s office.
The A1C is a different way of looking at blood glucose from your home testing devices, and it gives your medical team a measurement of your average glucose — day and night — over the past several months. It’s the primary measurement for determining how well controlled your diabetes is, which is simply another way of saying at how much risk you’re at for complications — the damage that elevated glucose levels can do to your body’s systems (eye disease, kidney disease, etc.).
Also, expect an annual blood test called a lipid panel, which measures cholesterol levels. Everyone with diabetes is unfortunately at increased risk for heart trouble, and keeping cholesterol at a good level is the best defense against heart disease.
And because excess glucose can easily damage the small blood vessels called capillaries, routine kidney screenings and eye exams are also part of the standard of care for people with type 1 diabetes, along with foot exams at every routine doctor’s visit.
Don’t slouch on any of these tests, as nothing is more important than catching complications early, so they can be treated properly before they become acute.
As you might have guessed by now, type 1 diabetes is expensive — very expensive. Neither the medications nor the equipment nor the supplies are cheap. You’ll be facing a large number of medicine copays, and bills from multiple medical visits and lab tests every year.
Most endos will want to see you at least quarterly. At first, your educator might see you monthly or even every few weeks. Other specialist docs may only need to see you once a year, but the costs still add up.
The Centers for Disease Control and Prevention
And if that weren’t enough, most patients have to spend an inordinate amount of time fighting with their own insurance companies to get coverage for the meds and tools they need to thrive. Expect to spend many hours on the phone with various call centers, in your attempts to clarify your needs.
Most commonly, the roadblock is something that health insurance companies call a prior authorization. It’s not enough for the doctor to prescribe what he or she thinks you need. Instead, reams of paperwork are often required to justify the order. Some medical offices have staff who can help you interface with your insurance company, but you’ll have to be patient, because prior authorizations often take weeks to months before they are approved.
Oh, and adding to the frustration is the fact that many prior auths only last for 6 months. You hardly get done before you have to start the process over!
But we have your back, check out our tips for getting the most out of your diabetes dollars.
Sometimes the sheer volume of what you need to do to stay healthy can be exhausting. Partly, it’s a lot of work, but mostly it’s because the work is incessant. There are no diabetes weekends. No holidays. No time off. The daily grind can become a burden on the soul and psyche.
Groups are easier to find than you think, because by being diagnosed with type 1 diabetes, you just joined a powerful, supportive, and loving family — a family much larger than you ever dreamed possible. Plus, a whole new generation is making type 1 diabetes more visible in society — and dare we even say, cool? — through social apps like Instagram.
It’s also critical not to be embarrassed about asking for help when you need it. The daily struggle is real and it’s all too common for diabetes to be coupled with burnout, depression and other mental health woes. It’s normal to feel tired, fed up, overwhelmed, or at your wit’s end at times.
But you may be wondering how to differentiate between burnout, distress, and true clinical depression, for example. Or you may not know where to turn for tailored support.
If you feel this way, it is important to seek professional help, not least to be able to differentiate between burnout, distress, and true clinical depression.
For more information on diabetes and mental Health, read “Coping with Diabetes Stress and Burnout: What to Know.”
So there are new things to learn. New challenges to face. But a type 1 diabetes diagnosis is no death sentence. It’s possible to live a ridiculously long life with diabetes. A life lived to the fullest.
Will type 1 diabetes ever be cured? Maybe someday. But a cure has been elusive, even after decades of dedicated research and effort.
In the meantime, new technologies and new medicines allow people with type 1 diabetes not just to survive, but to thrive. People with T1D race cars, win Olympic medals, serve on the Supreme Court, climb mountains, become rock stars, and can now even fly commercial airliners. Even the sky is no longer the limit.