
For years, distinguishing between the various types of diabetes was pretty straightforward: “Juvenile diabetes,” an autoimmune disease, was diagnosed primarily in children and teenagers when their own body’s immune system destroyed the insulin-producing (beta) cells in their pancreas. “Adult-onset diabetes” occurred in adults and was generally associated with insulin resistance and often with overweight. And “gestational diabetes” occurred in pregnant women and disappeared once the pregnancy was over.

In the past 25 years, however, determining what type of diabetes a person has has become more of a challenge. In large part, that’s because more and more children and teenagers are now being diagnosed with type 2 diabetes — the type that occurred predominantly in adults in generations past. Most of these children and teens are overweight. At the same time, it’s becoming clearer that type 1 diabetes can occur at any age and sometimes occurs in people who are overweight. In addition, another type of diabetes, called latent autoimmune diabetes in adults, or LADA, that shares some characteristics with both type 1 and type 2 diabetes, has been recognized. Muddying the water further is the realization that diabetic ketoacidosis, an acute, life-threatening complication of diabetes that is caused by a lack of insulin, can occur in people with type 2 diabetes — not just in people with type 1, as was previously thought. And while gestational diabetes is still diagnosed only in pregnant women, it is sometimes discovered that what is thought to be gestational diabetes is really type 1 or type 2 diabetes that happens to start during pregnancy.

The incidence of diabetes has increased so greatly around the world in the past 25 years that health organizations and media outlets alike often refer to the “diabetes epidemic.” Most of the new cases of diabetes are type 2 diabetes, which accounts for 90% to 95% of all diabetes cases. The world is concurrently experiencing an “obesity epidemic,” and while it is not universally accepted that overweight and obesity cause type 2 diabetes, it is generally accepted that overweight and obesity are environmental risk factors for developing type 2 diabetes.

The incidence of type 1 diabetes, which accounts for about 5% to 10% of all diabetes cases and is not generally thought to be linked to overweight or obesity, is also on the rise, albeit at a slower rate than type 2 diabetes. That means that people with type 1 diabetes are still a distinct minority within the population of people who have diabetes. And adults with type 1 diabetes tend to be less visible members of that minority, with much of the research and media attention focused on children with type 1. Many adults with type 1 diabetes have found that this minority status can present some medical challenges, as well as social and emotional challenges.

When type 1 diabetes starts in adulthood, its symptoms usually come on quite suddenly and are the same as those that occur in children with type 1 diabetes; they include weight loss, constant thirst and urination, and nausea. (In contrast, symptoms of type 2 diabetes and of LADA tend to come on more gradually, sometimes over a period of years.) Being diagnosed correctly and starting insulin therapy immediately is of utmost importance for people with type 1 diabetes: Because their pancreases are no longer producing any insulin (or virtually none), diabetic ketoacidosis can set in quickly. Oral medicines that lower blood glucose in people with type 2 diabetes are not effective in people with type 1. In spite of the similarity of symptoms, however, when an adult with symptoms of diabetes is found to have high blood glucose, the assumption is usually that the person has type 2 diabetes because of age. If the adult is overweight, the chances may be even higher that the doctor will diagnose type 2 diabetes.

For Phyllis Kornluth, a former merchandising director for a Fortune 500 company, diagnosis with type 1 diabetes came at age 59, when she went to see her doctor for flu-like symptoms. At that office visit, her doctor ordered lab tests, discovered that her blood glucose was high, and prescribed oral medicine for type 2 diabetes. By the end of that week, Kornluth remembers, she felt so awful that she made an appointment to see an endocrinologist, who discovered that her blood glucose was 700 mg/dl, diagnosed her with type 1 diabetes, and started her on insulin.

Cherise Shockley, diagnosed with diabetes age 23, was also initially put on oral medicine. It was only several weeks later, when she went back to her doctor because her symptoms were not getting better, that she was put on insulin.

As these women discovered, it can take patient advocacy to receive a correct diagnosis and the right treatment.

“When an adult comes into my office who doesn’t fit the general profile for type 2 diabetes — that is, he or she has no family history and is not overweight, I immediately order tests to check his or her antibodies,” says Dr. Claresa Levetan, an endocrinologist at Chestnut Hill Hospital in Philadelphia, referring to tests for autoantibodies typically found in the blood of people with type 1 diabetes, indicating that an autoimmune reaction is taking place.

“It is critical that doctors don’t assume that an adult has type 2 diabetes,” says Levetan. “In some cases, I have had an adult who is overweight and discovered that she does in fact have type 1. If doctors don’t order antibody tests, patients can ask them to do so.”

Author and certified diabetes care and education specialist Gary Scheiner, also based in Philadelphia, agrees with Dr. Levetan’s assessment about the importance of testing for antibodies. “Many type 1s go into a ‘honeymoon’ phase [a phase during which their pancreas once again becomes able to secrete insulin] after diagnosis, so it can seem like oral medications are working initially,” he says. “Another important piece of information in getting the right diagnosis is testing for ketones in the urine or blood, because people with type 2 rarely become ketotic.”

The guidelines for diagnosing type 1 diabetes in adults put out by the National Guideline Clearinghouse (a now-defunct initiative of the Agency for Healthcare Research and Quality) also mention that type 1 diabetes should be suspected if a person has lost a significant amount of weight or if the person does not have features of the metabolic syndrome, such as low high-density lipoprotein (HDL, or “good”) cholesterol, high blood pressure, or a high triglyceride (blood fat) level. (People with type 2 diabetes very often have features of metabolic syndrome.)

Getting good medical care

Beyond diagnosis, adults living with type 1 diabetes may face another challenge: finding a doctor who has as much knowledge about diabetes as they have. Many adults who have been living with type 1 diabetes since childhood have become experts over the years, both by learning as much as they can about managing their condition, and by simply carrying out their own self-care year after year. These adults — as well as those diagnosed later in life — seek out physicians who have just as much information and insight as they do, sometimes without success.

For Douglas Deatrick, a 49-year-old who has been living with type 1 diabetes since age 9, a good endocrinologist can be hard to find, but a good primary-care doctor or internist is even harder. According to Deatrick, “There has not been one [family doctor] who is willing to just take care of the regular stuff, and they all think they can manage my diabetes for me. My first question is ‘What is Symlin?’ When they don’t know it, I just leave.”

Some adults with type 1 diabetes deal with this by using a primary-care doctor mainly to get referrals to an endocrinologist or by seeking out an endocrinologist on their own for their diabetes care. However, an individual’s ability to do this may be limited by a scarcity of endocrinologists in his area, a health insurance plan that limits visits to specialists, or an inability to pay out of pocket for visits not covered by health insurance.

Another possible route to getting good diabetes care is to seek out the services of a certified diabetes care and education specialist (CDCES) (formerly known as certified diabetes educators, or CDEs) to supplement a physician’s care. CDCESs are credentialed health-care professionals who have acquired special knowledge of diabetes and its care. Many health insurance plans cover a certain number of hours of diabetes self-management training per year, and paying out of pocket for additional hours with a CDCES may be more affordable than paying to see an endocrinologist.

Many adults also take charge of their own diabetes care by reading authoritative books, magazines, or information posted on the Internet, by talking with other adults with type 1 diabetes or participating in online forums, or by attending events or lectures that offer information and education about diabetes. Thus empowered, these adults are able to proactively raise concerns related to their diabetes control with their doctors.

Social challenges

Many people know nothing about diabetes until they or a close friend or relative are diagnosed. But as more people develop diabetes, and with more media coverage of it, more and more people have at least heard of diabetes. The trouble is, what people hear from their friends or relatives or through the media is not always accurate, and it often does not distinguish between types of diabetes. What people may “know” about diabetes, therefore, may be wrong or may not apply to all types of diabetes.

“For me, the trouble comes from people assuming that with the right diet and a little exercise, I can stop taking insulin like someone they know did,” says George Simmons, 45, who was diagnosed with type 1 diabetes at age 17. “When I am in social situations where I am around people who do not know about my type 1 diabetes, I know that at some time I am going to have to spend some time educating this person about the difference between type 1 and 2.” He goes on to say, “Type 1s get little sympathy because for some reason, diabetes is a disease riddled with guilt. So many believe that diabetes is caused by eating too much sugar and being fat and lazy. People think you did it to yourself.”

In my own experience, I have noticed that I always say “type 1” when telling someone I am meeting for the first time about my diabetes, and I quickly follow that with, “I was diagnosed when I was 10 years old.” I haven’t lost all of the weight I gained during my two pregnancies, and I know that being overweight is associated in the public mind with type 2 diabetes. I also know that many people hold the individual responsible for being overweight or for having developed type 2 diabetes.

Whether or not this attitude is fair, having lived with the challenges of type 1 diabetes for 34 years, I don’t want someone to think for a minute that I am in any way responsible for having diabetes or that if I just lost some weight it would go away. We adults with type 1 can carry a bit of a chip on our shoulders, but considering the often inaccurate media portrayal of and public attitudes toward diabetes, this is not surprising.

Charlie Kimball, 34, a professional race car driver who was diagnosed with type 1 diabetes at age 22, knew little about diabetes when he was diagnosed. Now that he knows more, however, he’s doing his best to educate other young adults about the signs and symptoms of type 1 diabetes.

According to Kimball, the shock of his diagnosis was compounded by a thought that he could not get out of his head: “Don’t only old people get diabetes?” Kimball had dreamed of becoming a race car driver since he was a little boy, and he could not understand at first how he, a healthy athlete who exercised daily, could be diagnosed with this condition. As he began to understand type 1 as an illness different from type 2, his shock turned into determination.

“At first when I was diagnosed, I thought I wouldn’t be able to do what I wanted to do, but when I spoke to my endocrinologist, he mentioned other world-class athletes who have type 1 diabetes and compete. We just had to figure out how to make it work,” he says.

Kimball has spoken publicly about his diagnosis from the beginning, and he shares his daily journey as a young adult living with type 1 diabetes on his Twitter account at @RaceWithInsulin.

Awareness pros and cons

Charlie Kimball is one of a number of public figures with type 1 diabetes who have spoken out about their diabetes. Others include Olympic swimmer Gary Hall, Jr., 44, American Idol finalist Elliott Yamin, 40, and actresses Jean Smart, 67, and the late Mary Tyler Moore. For non-celebs, seeing others with type 1 diabetes in the spotlight can be inspiring. “It’s awesome to have someone like [football player] Jay Cutler, [35], Charlie Kimball, and other celebrities, because they spread awareness,” says Cherise Shockley.

On the other side of the public awareness coin, however, are media campaigns that feature frightening imagery and imply that everyone diagnosed with diabetes will go blind or lose a limb. “It is awful when scary images are used to try and motivate us to take care of ourselves,” says George Simmons. “We deserve a positive future as a goal. Not trying to scare us into taking better care of ourselves. It doesn’t work for me at all.”

Douglas Deatrick tries to find the humor in the way that type 2 diabetes generally gets more media attention than type 1 — and in the way his colleagues rib him about it. Deatrick, a stock trader, works in an office that has a television tuned to business news channel CNBC all day. Because he’s educated his coworkers about his type 1 diabetes, they try and catch every commercial with information about type 2 diabetes and say, “Hey Doug, there’s another type 2 commercial.” “I just laugh along with them,” Deatrick says.

Connecting with others

The good news is that new forums for connection and expression for adults with type 1 diabetes are becoming more readily available. This is enabling more adults to claim a voice, advocate for research, and find ways to support each other through the daily challenges of living with a chronic illness that, to the outside eye, is largely invisible. Here is a list of helpful resources for adults with type 1 diabetes.

Gina Capone, 44, was diagnosed with type 1 diabetes at age 25 and is formerly the community manager for TypeOneNation.org, a social networking site created by JDRF (formerly the Juvenile Diabetes Research Foundation International) so that adults with type 1 diabetes could connect online to discuss such topics as insulin pump therapy, nutrition, pregnancy, and men’s issues related to type 1 diabetes. Gina is on the TypeOneNation site daily and discovered that for the thousands people who are part of this online community, connecting to other adults with diabetes can be life-changing.

“There is always support for me at the site,” she says. “I can go online if I’m feeling down or have a concern, and someone will answer me…someone who is living with type 1 and knows what I’m going through.” Gina notes that her HbA1c level, a measure of blood glucose control, has dropped from 9.1% to 7.1% since she has been part of the TypeOneNation community. She credits the tips she has gotten from other adults with type 1 diabetes with helping her to better control her blood glucose levels.

For Phyllis Kornluth, connecting with other adults with type 1 has also been the key to her emotional well-being and ability to face the ongoing, daily demands of life with type 1 diabetes. When she was first diagnosed, she recalls, “I really didn’t know what the difference was between the types of diabetes. I only knew that I wanted to find and connect with other people who were living with Type 1 diabetes, and I couldn’t find any!”

Since then, Kornluth has not only found other adults living with type 1 diabetes, but she has also become a volunteer with the Divabetic program, in which diabetes education is introduced in a makeover format. (While Divabetic’s outreach is aimed primarily at women with type 2 diabetes, its events and programs are open — and welcoming — to women with any type of diabetes and to men, as well.) “It’s not only about diabetes,” Kornluth says about the makeover events. “It’s about fashion and makeup and feeling good about taking care of yourself.”

Becoming a blogger has given George Simmons a way to reach out to others who can understand his experiences. “Having an invisible disease is rough,” he says. Simmons credits the online diabetes community and connections that he has made with other adults living with diabetes with giving him the support he needed to start taking care of his diabetes.

Making a difference

Having to constantly educate others about diabetes and the differences between type 1 and type 2 diabetes can get annoying, but sometimes making the effort can feel worth it. Last spring, for example, I picked up a book by one of my favorite writers, New York Times Magazine reporter Michael Pollan. In the book, In Defense of Food: An Eater’s Manifesto, Pollan notes that what Americans are eating and how they’re eating it (in front of TVs, in cars, etc.) is making them less healthy. I was agreeing and appreciating his well-written arguments until I got to a part in the book about the obesity epidemic and diabetes. He drew no distinction between type 1 and 2 diabetes and even implicated insulin pump companies as benefiting economically from the obesity epidemic.

I was so upset that I wrote Pollan an e-mail message, as follows:

“Dear Mr. Pollan,

I am the author of Insulin Pump Therapy Demystified (Marlowe & Co, 2002) and I can assure you that the vast majority of pump users have type 1 diabetes. That you include the insulin pump among technologies developed out of the obesity epidemic is absurd. The pump is the technology that has helped to keep type 1 users alive and healthy. I could not have had two healthy pregnancies without it.

Please consider this point. I hope that you and no one in your family ever has to live with type 1 diabetes and then deal with the media failing to distinguish the causality of these different types of diabetes.”

I was pleased to receive a prompt reply from Mr. Pollan, thanking me and letting me know that in the future, he would be more careful about making a distinction between the types of diabetes. It was a small victory in terms of educating a media representative about diabetes, but one that I was happy to win.

Want to learn more about Type 1 diabetes and adults? Read “Type 1 Diabetes In Adults: Can It Be Prevented?“