Thursday, March 28, 2013

The Loneliness of T1D

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 T1D, 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 T1D 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 T1D 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 T1D; we've set up playdates with other kids with T1D; 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 T1D. 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?


  1. Katie - Your blog reminds me in some ways of what families with allergies go through. Fortunately our daughter has only a mild allergy, to only a few items - nothing like what you are experiencing in terms of impact on our family (though for many families with extreme allergies the experience is more similar I imagine). But, a number of things resonate: the sense that she both likes the extra attention that sets her apart but the frustration at not always being able to eat the same foods (usually treats) that other kids have; the worry that she will eat something she shouldn't while I'm not with her; the difficulty in getting other adults to monitor food with the same vigilance that you do.

    Do you hear this from families with allergies as well?

  2. Jen--
    I totally agree with you that there are a lot of similarities. I'm planning on writing about this soon. Families with nut allergies tend to be among those who have a real sense of what we're going through with Bisi--and I now feel that I have much more of a sense of what it would be like to have a child with food allergies.

  3. And here I am with both, and it is the same. My 9 year old son has nut allergies, as well as sesame seeds. We've been dealing with his allergies since he was 2. We do not restrict the other kids to his diet, but we don't do things like cook with coconut oil, or sesame oil. Now that Eleanor has diabetes, our first born son, who is 12, is the only one who can eat whatever he'd like. Eleanor is not quite so alone in all of this as your Bisi is though. My husband also has diabetes. He has been labeled as LADA, but, because he was diagnosed 14 years ago they didn't call it that then. They originally thought he had type 2, because he was 34. Anyway, dealing with the diet for the allergies and the diabetes are very similar, but the diabetes scares me far more. She could just drift off in her sleep…

  4. It sounds like you have so much on your plate! That is a lot of different food and health concerns to worry about, and a lot to take in, given that your daughter was recently diagnosed. I feel like it took me a good few months to get my head around it, though as you are probably already finding out, one of the hard things is that the insulin needs are always changing, so it's not as if once you figure things out you're set. But I would think your husband's knowledge of his own diabetes would help.