I was diagnosed with type 1 diabetes at the age of 33. The hospital thought I was type 2 at first, despite the fact that I was slightly underweight. They sent me home with pills, and I ended up in the hospital again a week later. This time, I was sent home with an insulin pen and a VIDEO of how to use it, since they didn’t have one they could demonstrate for me. I pretty much had to figure out everything by myself those first few weeks.

A co-worker of mine with a diabetic daughter was aghast. The hospital in which his daughter was diagnosed had a comprehensive education program before they released her. If I had been a cute little kid, I’m sure I would have been turned loose with more than a video.

Where are the support groups for ADULTS diagnosed with type 1? I can’t possibly be the only one to whom this has happened, can I? I feel like a total freak. Most of the support groups I’ve seen are for parents of kids with type 1 or for adults with type 2. Has anyone been through this? Where do I start? I’m trying to do intensive insulin therapy, but I’m frustrated and scared. If I’m too aggressive, I go low, and if I’m cautious, I skyrocket.

I live alone and have no real support system. My mom deals with type 2 diabetics at an adult Mental Retardation center and doesn’t really understand type 1 very well. My sister gets woozy if I even mention that I want to go on the pump (it grosses her out) and that’s about all I’ve got. My endocrinologist isn’t diabetic and doesn’t understand why I get so frustrated. Can you recommend anything specifically for adult-onset type 1s, whether on the web, or books, or anywhere?

You are certainly not a freak nor even as rare as you might think. As many as 40% of people with type 1 diabetes develop the disease after adolescence.

In spite of this, your experience of being initially misdiagnosed as type 2 and then given little or no helpful information is all too common for those whose diabetes appears after age 25 or so. As a result, your first year with diabetes has been much more difficult than it needed to be. But, that can change.

First and foremost, I’d suggest finding a medical/educational team that works with adults with type 1 and does pumps, since that’s something you’re interested in. This is most likely to be an office or group with an adult endocrinologist who has a special interest in diabetes. Ideally, they would have a diabetes educator in the office or at least have a close relationship with the educators at a local hospital. If you’re lucky, your primary care provider (PCP) may be able to refer you to such a team. Tell him or her that you would like to see an endocrinologist who does pumps to see if that would be right for you. Another helpful option could be the Diabetes Case Manager with your insurance carrier. That person should have a good knowledge of resources in your area. Call the Member Services number on the back of your insurance card. Hang in there. The chances of your actually reaching the right person on the first try is “slim to none.”

There are certainly good adult teams with the right experience and resources in Boston, but you might also find one closer to home. If neither your doctor or your insurance plan is helpful in locating one, you can take on the search yourself. Call your local or area hospitals and ask to speak to the diabetes educators. Ask them about both medical teams that work with type 1 adults AND about the existence of a type 1 or pump support groups. Such things DO exist, although not in every community. You may also want to ask them to pass your name and number on to adults they know who have type 1 with the request that they call you so you can pick their brains about local services and providers.

Your local American Diabetes Association affiliate should also be able to tell you about the existence of support groups that meet your needs.

When you have a team, priority number one is education. You need specific information about matching up food and insulin to get better results from your efforts at more intensive management. Your family members need education as much as you do. That will help them understand and support your efforts. Ask to bring them along to your classes or education appointments.

And start your own diabetes library. Here are a few ideas:

Diabetes 101: A Pure and Simple Guide for People who Use Insulin, Brackenridge and Dolinar, John Wiley and Sons.

Diabetes Myths Misconceptions and Big Fat Lies!, Brackenridge and Swenson, Diabetes Management & Training Centers Inc.

Pumping Insulin, John Walsh, Torrey Pines Press.

All are available at Amazon.com.

BB