Type 1 diabetes used to be known as "juvenile" diabetes, occurring most often in children and teens. When adults find out they have diabetes, it is usually considered to be type 2, but there are some adults who actually have type 1 instead.
Most of the teaching about type 1 diabetes is geared for kids and their parents. Adults diagnosed with the disease often find that there aren't very many information or support resources for them. They sometimes feel like they don't "fit" the disease.
A recent query of About.com Diabetes readers reveals the emotions, frustrations and ultimately the strength that comes from dealing with a "juvenile" disease. E-mails from readers like you tell a compelling story of what it's like to be diagnosed with type 1 as an adult.
Adults' Experiences With Type 1 Diabetes
Colette: "I was diagnosed with type 1 diabetes at age 50 and have been on insulin for 19 months. I had no dramatic episode of high blood sugar, no family history of diabetes, was in good health and took no medication. I went for my annual physical in August 2005 and my blood sugar was 163. Needless to say, I was in total shock when I was told not only did I have diabetes but it was type 1."
Sue: "I was diagnosed at age 48 with no history on either side. I had all the classic symptoms, especially thirst. I was teaching some classes at the time, and I literally could not talk for more than 2 minutes without having to take a drink."
CH: "I was diagnosed at age 38. Had no prior symptoms, no family history, was only about 10 pounds overweight and fairly active."
Lynn: "I was 49 when I was diagnosed with type 1 "juvenile" diabetes. I went for a full physical because my doctors thought I had cancer. I went from 143 pounds down to 92 pounds over a year and a half. There is no diabetes on either side of my family -- I am the first. I was originally diagnosed as type 2 strictly due to my age, but after a test was done, they slapped me on insulin and the diagnosis was changed to type 1."
Greg: "I was diagnosed when I was 33. [There is] no history of this on either side of the family. I had dropped from 185 pounds to 135 pounds over a period of about 6 months. I have always been an athlete and have continued to train in kickboxing, karate, golf, and weightlifting since graduating from college. I only went in to see a doctor because I couldn't sleep [and was] constantly urinating.
How Did Readers Feel About Being Diagnosed?
Type 1 diabetes doesn't appear to have risk factors associated with it, like type 2 diabetes does. People diagnosed with type 1 often feel that they have been hit "out of the blue" with a serious, life altering disease. This can be extremely isolating for people, especially when they turn to resources for help in dealing with the disease and find that most of the information deals with children and issues that parents and children might face. Adult issues with being newly diagnosed with type 1 are rarely addressed.
Sue: "I felt very alone, confused, and uninformed for the first several months."
Lynn: "I totally freaked out when I was put on insulin as I was terrified of needles."
Greg: "This illness has been both a blessing and a curse. It complicated my work life enormously, has been exceedingly expensive, and has prevented me from doing several things I wanted to do."
Stephen: "I was very upset for the first 6 months. If it wasn't for my wife and kids, I would have vanished from the face of the earth because I couldn't bear to think of life with this condition. I told many health care people this, I got nothing."
Nicole: "I am [sometimes] terrified [that] I won't wake up from a middle-of-the-night hypo."
What are Some of Their Frustrations in Dealing with Type 1?
Because a diagnosis of type 1 diabetes is atypical for someone older than 21, it's often overlooked, at first, as a possibility. There can be a period of time when people don't really know what kind of diabetes they actually have. This can add to the frustration, because treatments, testing, and teaching can seem conflicting and ineffective until the real diagnosis is uncovered.
CH: "My biggest frustrations have been: getting properly diagnosed (my first endocrinologist said I had type 2, though I was GAD positive); finding a good endocrinologist and getting an appointment to finally hear the diagnosis from a doctor (took 6 months); hearing the official diagnosis after I had already done my own research that led me to the same conclusion."
Nicole: "Yes, it still is difficult for me and gets me down, but it's something that I have learned to deal with for the most part."
Shawn: "I'm frustrated with doctors who tell me that type 1s should have no trouble losing weight (um, anyone remember that dealing with hypos requires you to EAT?). I wish I could sit down to a meal without having to calculate how many carbs I'm eating, figure how much fat will affect the absorption, and thus what my bolus should be."
Lynn: "Changing 50 years of habits IS hard. There is no one my age to talk to about type 1, and people tend to assume I know more than I do because I am type 1 -- they assume I've had it forever. No one seems to be interested in researching possible triggers of older type 1s."
What Kind of Coping Methods Worked for Them?
As with any chronic illness, people seek ways to cope and get back to living their lives. There is a tremendous amount of new information, techniques, equipment, and treatments that come with being diagnosed with type 1 diabetes. Sometimes, it takes a while to incorporate everything. It can feel like life is never going to normal again. As our readers point out, it is a process. It takes time.
Ryan: "After three years, I am still learning and getting used to living with all of the inconvenience that this disease comes with, but it could always be worse. At least it can be controlled."
Sue: "Luckily, I found great certified diabetes educators at the local hospital who were wonderful resources, coaches and counselors. And I found the About.com Diabetes Forum, so I finally found a community of people who understand."