Five years ago today, I packed my bags, kissed my mother good-bye, and bid a fond farewell to my life as an Oregonian. I had never lived outside of that state, and in the years since moving to the East Coast many people have asked, “Weren’t you scared?!”
Honestly, no. Mostly because I had no idea what I was supposed to be scared of. I had a job, although no car and no place to live (details, details). I knew a handful of diabetes bloggers (shout-outs to Gina and Scott S) and some local family. I was very excited to live so close to my dream city… New York, New York! The fact that I was essentially homeless with no transportation and very little idea of where anything was didn’t really dawn on me.
That is, until I landed. Then I got a little nervous. But as you can see, I have survived.
There are hundreds of PWDs who’ve graduated from high school and college, and they’re spending the summer getting ready to move on to the next phase of their life. Although I didn’t go far for college, the experience of moving a long distance for college or your actual career are fairly similar.
In honor of my five year “move-aversary,” I have five pieces of advice for PWD young-ins (and their parents, too!):
* Find a primary care doctor, an endocrinologist and a CDE. It’s probably the last thing you really want to do, especially when you have school, work or your social life calling your name. But trust me, Murphy’s Law dictates that when you are the least prepared, something will go wrong. So show Murphy who’s boss and find that health care team. How to do that? It can be particularly challenging because pediatric endos don’t always know who to recommend, and your insurance company’s database is probably not helpful.
A few suggestions: head to Google and look at websites for endos in your area; post a message on a forum to get recommendations from the locals; check with the local JDRF or ADA chapters to see who is involved in the community; talk to your University’s health center to see if they have any recommendations.
The SEARCH for Diabetes in Youth study showed that 32% of teens ages 13-18 years and just 18% (!) in their early 20s achieved an A1c under 8%. Finding a new healthcare team is difficult, but it’s also incredibly important. Don’t let the gaps happen. The longer you go without a team, the harder it is to get back into the groove.
(We’re going to have even more coverage on transitioning from pediatric care to adult care in the coming weeks… So stay tuned!)
* Get plugged in. Easier said than done, right? Right. Throughout college, I didn’t have very many friends with diabetes. No one understood what I was going through, and my A1cs definitely displayed the consequences of my detachment. It can be hard to find a place to plug in, especially when you’re a young adult with diabetes. You’re either “too old” for type 1 or you’re “too young” for the type 2 crowd.
The JDRF and ADA are pretty good places to start looking for support groups, as both organizations are (finally!) realizing that your emotional health is as important as your physical health. Other spots to look: your clinic (see aforementioned bullet about finding an endo), the student health center, social networking websites like Meetup.com or even Facebook, and forums on diabetes websites like TuDiabetes.org where you can search by member location. Even if you only make contact with one person, that often leads to more connections later on. I found one local diabetes support group through Meetup.com, and the other one through Twitter!
You can also check out the College Diabetes Network, an organization led by two twentysomethings who are coordinating chapters of PWDs on college campuses around the country.
* Ask the embarrassing questions. When it comes to things like sex and drinking, it’s easy to shy away about asking if these things will affect your diabetes, especially with parents. Here’s a hint: they do affect your diabetes. Whether it’s what to do with your insulin pump during intimacy, what to expect from the hormones in birth control, or how to deal with insulin and alcohol, some of the best people who can help answer these questions are the ones who have been there before you.
Not that we advocate these practices, but if you are using any substances or changing up your lifestyle, it’s important to be as educated as possible about how these things affect your diabetes. Drinking? I talked to my nutritionist about how alcohol affects the liver. Birth control? I chatted with my endocrinologist about which ones were less likely to cause insulin resistance from the hormones. Intimacy? That actually might be best saved for a fellow PWD, either in a support group or anonymously on an online message board. There are plenty of experts and folks here to support you, and some are required by law to keep your confidence.
* Don’t keep your diabetes a secret. At least, not from everyone. There’s a time and a place for disclosure, and that doesn’t necessarily mean on the first date or in your job interview. The people who need to know are (IMO): your boss (after you’re hired), your professors, your roommate(s), your significant other, and at least one co-worker. Everyone else is optional, though I’m of the school of thought that more is better.
The reason you need to tell people about your diabetes is simple: your safety. The last thing you want is to collapse at work or in class and have everyone think you just stayed up too late. It’s important that those who spend the most time with you understand diabetes to a degree in case their is an emergency. Most of my co-workers at my first job knew I had diabetes, and I also informed all my roommates that I had diabetes before we moved in together. I wanted to make sure they would be comfortable and willing to help me if I needed it.
It’s also easy to think that, now that you’re “on your own” you’ve also been totally abandoned and no one cares about you. Cynthia Berg, a psychologist at the University of Utah, who presented on the topic of teens and transitions at the recent ADA Scientific Sessions, says, “It really takes a village to manage diabetes. So are there friends that can be helpful as well? Some new work shows that romantic partners, when they come on board are really helpful. Putting a social support network in place that may facilitate the transition may be a better way to think about this.”
Another reason I told co-workers and friends is because for my first year after college, I lived alone. I felt more comfortable knowing that people realized the risks of diabetes and helped keep an eye on me without being overbearing.
* Stay in touch. When I graduated from high school, I moved two hours away by car. When I graduated from college, I moved six hours away by plane. Both times, I wanted to distance myself from my parents. I’m a grown-up! I should manage my diabetes on my own!
Berg believes there’s no reason to expect that children necessarily need to be “launched” out into the real world all alone, but that means parents and their teen or college student need to have good communication skills.
In transitioning, managing diabetes alone can be overwhelming. With today’s technology, phone calls, texting and emailing can help with adjustment. It’s important to not judge your child’s supposed “mistakes.” Just like we need a little help managing our money or building our job interview skills, most teens and young adults in transition aren’t going to do everything perfectly and they might not even take your advice. But that doesn’t mean it isn’t valuable, you just need perspective on their stage in life.
For those of you who have “flown the coop,” what advice do you have for both parents and their teens or twenty somethings?