Imagine that you are in your twenties, thirties, or even your forties or fifties. You are progressing down your chosen path in life, whether it's an established career, a relationship, marriage, children or all of the above. All of a sudden, you're losing weight, thirsty and in the bathroom all the time, and you feel like you have no energy. You just plain don't feel good.
You find out that you have type 1 diabetes, and your world is turned upside down, at least until you get the hang of managing diabetes in the middle of everything else you have to do in life.
There aren't many resources for adults diagnosed with type 1 diabetes. Most of the literature, and most of the support, is geared toward kids because typically type 1 strikes kids and teens. Not so long ago, type 1 diabetes was known as "juvenile diabetes."
How does it feel to be hit with a disease that is usually diagnosed in children? E-mails and comments from readers to About.com talk about some of the issues of dealing with a new diagnosis of type 1 as an adult.
Mary, on feelings of isolation:
I was diagnosed with Type 1 in 2005 at the age of 42. My doctor had never met a Type 1 adult before and absolutely freaked. She rang the specialist and talked to him in front of me before even telling me of her diagnosis. Since then I have self-managed my diabetes control and go through periods of frustration and guilt when I get it wrong. I live in a small settlement north of Wellington in New Zealand, where there are no local diabetes nurses etc, at present. Being a full-time worker I find it very difficult to connect with anybody else with Type 1 as most of the diabetes meetings are organized for the middle of the day. Isolation plus.
Jason, on having trouble believing the diagnosis:
I was just diagnosed with type 1 diabetes today. I am 32 yrs old and have no family history of diabetes and am in pretty decent physical shape. I went to the doctor one week ago for a routine physical that I scheduled about a month before. Coincidentally, I picked up some kind of flu the day before the appointment, so when I went to the doctor I was running a temperature of about 100, which was down from 101.5 the day before.
The doctor noticed very high glucose in my urine, and ran some other tests, and concluded that my blood sugar was very high, and that I was diabetic. He kept saying how bizarre it was, and repeatedly asked if I was sure there was no history in my family. “Where would this come from?” he said.
He gave me the testing equipment, and some insulin and told me to keep a record of my blood sugar and to give myself an injection every night and to come back in a week. I did quite a bit of research over the next couple of days, and found that during a fever, the body naturally increases blood sugar. At this point, I was seriously starting to question the diagnosis!
Chris, on the ups and downs of diabetes management:
I’m 32 years old. I was diagnosed with type 1.5 diabetes about 3 years ago, after an unusual blood test following an episode of bronchitis where I was treated with prednisone. My vision went blurry, I started losing weight…thirsty and you know the rest of the story. So far, I’ve managed fairly well, even greatly reducing my oral medications through diet and exercise.
I’ve had ups and downs over the last few years. I hated my endo doc, so I recently decided to stop going to him and resumed going to my primary care. I was told my brand of diabetes was unusual, but at this point I pretty much know what kind of treatment I need to keep my A1C down. My greatest fear is going downhill and having to go on insulin. Two uncles of mine died young of full blown type 1 that they [developed] as children. This fact does little to comfort me, but I try keep a positive attitude and a stress-free lifestyle.
Danielle, on loved ones and responsibility:
I am a 35-year-old woman, I was diagnosed in June of 2000 at 27 years old. I had many of the telltale signs: weight loss, thirst, using the bathroom all night long, need for naps, weird vision and awful charley horses in my calves at night. I had been on a business trip to DC in March and got a nasty cold/flu…after that I was working long hours and attributed feeling awful to that.
At the end of May, I started getting my period twice a month and finally went to the doctors. She called me that day at work and told me to get to my Primary immediately. After confirming the diabetes at 520 and making sure I didn’t have ketoacidosis (I can’t spell). They let me stay at home instead of checking me into the hospital. The next day I met with an endocrinologist and the rest is history. I live in the Boston area and am blessed with some of the best doctors and medical resources in the world. Since 2000, under the watchful eye of a team of specialist I gave birth to beautiful healthy boys in 2002 and 2004.
I made the decision to wear an insulin pump in 2003 because I didn’t want the needles around the house with little kids. My best advice… I have lots…find a doctor who you trust. If the advice doesn’t feel right, find another. Take all unsolicited advice with a grain of salt. I have had stupid people say horrible things to me.
Insulin pumps are wonderful and WILL change your life. I carb count and it works well for me. My frustrations… exercise! My blood sugar drops so fast that I tend to avoid “working out.” I do walk and hike and try to move as much as possible but I sometimes feel defeated. Also, it's hard to explain to your loved one what you are dealing with. My husband sometimes gets annoyed with me when I have an insulin reaction because I let myself drop too low. It's exhausting being responsible all the time.
