One of the loneliest and scariest moments of my life was right after the doctor told me that I had Type 1 diabetes. It was unknown, it was scary, it was a disease that I was told would NEVER go away. And then the weeks and months that followed felt just as overwhelming and scary as I struggled to learn how to count carbs in all my foods, inject myself with insulin, monitor my blood sugar, and gradually get to know how my blood sugar responded to all the things that affect blood sugar; things that used to be trivial, things that I never had to worry about BEFORE but I did now — things like gym class, or feeling stress, or that #$%@ dawn phenomenon that still gets me sometimes! Yep, that first year was a roller coaster, one I would never volunteer to ride again!
Here’s what made me think about all this. The other day, a piano student of mine told me about a friend of hers who just found out she has Type 1 diabetes. And, of course, this little girl and her family are facing the same fears and stress and uncertainty that I faced all those years ago. I offered to talk with them, and do whatever I could to help them adjust, because I know firsthand just how hard it is. And I also know firsthand how helpful it is to really understand that you’re NOT ALONE in this!
I’ve written about this experience in more detail previously, but when I was 15, a year after diagnosis, I went to a summer outdoor camp that was just for kids with Type 1 diabetes. I went up there thinking this “special camp” would make me feel MORE weird and everyone would be walking around like sickly, helpless Tiny Tims (I even imagined all the campers wearing petticoats, newsy hats, and asking for more porridge in British accents while steam whistles sounded in the background — it was a very detailed image!). What I found was quite the opposite — I found normal kids who also had this disease. I found out that I really wasn’t alone, and that while none of us LIKED having diabetes, and it wasn’t easy for anyone, it was possible to live with it.
For those who are newly diagnosed, for those who are struggling with control, for those who are feeling the fatigue and burnout that occasionally creeps up for EVERY SINGLE ONE OF US, remembering that we’re not alone is SO important. We need to remember this, and reach out. Those of us who have lived with this disease for a number of years can find ways to help others who are facing a new diagnosis. We can volunteer, we can become advocates with organizations like the American Diabetes Association, we can help organize events that help raise money toward a cure, and more.
And for those of you reading this who have only recently been given the unwelcome news that you have diabetes, I have one big piece of advice — don’t shut the world out, and don’t retreat. It’s not easy to adjust to this, and of course there is sadness and frustration and hopelessness, but the best thing you can possibly do is reach out to others. Find the local support groups — they exist both for people WITH diabetes, and for parents of the children with diabetes (and believe me, as parents, you need a chance to process how YOU’RE feeling, sometimes even more than your child does!). If a good diabetes center is near you, schedule an appointment there if at all possible (with our health-care system, it’s not always possible, and that’s a crime, but a topic for another day). I have often taken comfort in simply going to my doctor’s appointments and KNOWING that the whole waiting room is filled with others facing the same challenges that I am!
Diabetes is tough. It never goes away, and it never stops pulling little tricks on you here and there. But control is possible, and a life is possible. You are not alone out there — don’t forget that!
To learn more about getting diabetes support, read “Peer Support, Education, and Mentoring.”