The Loneliness of Type 1 Diabetes

Yesterday, Mark, Jamie, and I each got separate letters from the Joslin Diabetes Center saying that the results of our screening tests for type 1 diabetes were negative. This does not mean that we are totally in the clear, but still, it’s good news. In the words of the letter: “This means that no diabetes-related autoantibodies are present in your blood at this time. This is not a guarantee that you will never develop diabetes. It does mean that you are currently at lower risk than if you tested positive.” If one of us had tested positive, they would have done more testing, including a glucose test like the one they give to pregnant women, where you down a very sugary drink, and then are tested to see how you process it. If, after that second round of testing, we were still deemed to be at high risk for developing type 1 diabetes, we would have been eligible for a clinical trial, testing whether ingesting small amounts of insulin helps to stave off the disease. Mark and I are now permanently ineligible for the study; Jamie could still be tested each year to see if his autoantibody status has changed — ie, to see if his immune system has started attacking the beta cells in his pancreas.

Of course, Mark and I agonized over whether Jamie should do the test. Would it scare him? Would he start worrying that he, too, will get diabetes? How would Mark and I handle the news if he tested positive? What would we tell him? In the end, we decided that if he is prone to getting diabetes, we didn’t want to be blindsided by it, as we were by Bisi’s diagnosis. And if there’s a chance that this study would delay the potential onset of T1D, we wanted to know that we’d done everything we could. In explaining the clinical trial, we told him that this could help push type 1 diabetes research forward, and therefore might help his sister. 

The day of the test, Bisi was pretty thrilled to see the three of us get blood tests while she could just sit by and watch. (It reminded me of when Jamie and Bisi got their flu shots this year; he was eligible for the flu mist and was begging for it, since he didn’t want the injection. Bisi was not technically supposed to get the live vaccine that’s in the mist, since her immune system is a bit compromised by the diabetes, but the nurse told me it was probably fine, and it was my choice. What would you have done?? I decided that both would get the shots, and Jamie immediately started to sob. Bisi got hers, as cool as a cucumber, and then watched with a cheshire cat grin while Jamie cried and got his. Afterwards, he admitted that it wasn’t so bad.) 

For all of our anxiety about whether to do the test and how it would affect Jamie, he seemingly hasn’t thought one bit about it in the six weeks since. He’s never asked what the result was, or mentioned it in any way again. Mark and I are thrilled that, at least for now, we can banish this one worry from our thoughts. But for Bisi, I feel that this “all clear” news is more mixed. Having type 1 diabetes sets Bisi apart — sets her apart from her friends and from her family. In some ways I think that the extra attention she gets through the diagnosis makes her feel special–friends walk her down to the nurse, she gets a special pink card to save her place at the lunch table since she’s often late because of the blood sugar testing and insulin dose. But the diagnosis makes her feel lonely too. We’ve tried to do what we can to remedy this: Bisi and Jamie have a favorite babysitter who has type 1 diabetes; we’ve set up playdates with other kids with type 1 diabetes; we all usually eat the same meals, and, as I’ve mentioned, Mark has gone gluten free in solidarity with Bisi. (Bisi recently said she wanted the whole family to go gluten free, but I see no reason to force this on Jamie; and I’m not ready to give up all the delicious things that have gluten–though I do try to avoid them when Bisi’s around. The most difficult challenge so far has been not ordering the amazing homemade biscuits at our favorite BBQ place.) 

None of this makes up for the fact that Mark, Jamie, and I have no idea what it feels like to have this disease–the sharp hunger when she’s low, the listless tiredness when she’s high, and the emotions caused by the swings in between the two extremes. Most of the time when your child is going through something, you can tie it into your own childhood experiences. You can help them work through it because you understand just how they feel. Bisi feels this absence keenly, even though she’s only expressed it a couple of times. Once she asked whether our new dog, Cinnamon, might get type 1 diabetes. Another time, she was talking with our friend Rachel, who has asthma, as does her son, Owen. Bisi asked all kinds of questions about asthma and then said about Owen: “He’s lucky. I think it’s nice that someone else in his family has what he has.” So for now, there won’t be any discussion in our house of the results of those blood tests. Why would we want to rub it in?