Wednesday, November 13, 2013

I’ve disclosed my diabetes to thousands of people over the years. Sometimes, the reveal  is made in the context of friendly dialogue, sometimes because the other party actually needs to know as a matter of safety or medical practice, and sometimes I’m sharing my diabetes story to a room filled with people as I am giving a talk on racing a bike and living well with the illness. As you might imagine, I’ve had every possible reaction, ranging from surprise to pity. I’ve been met with every possible follow-up question, anecdote, sympathetic nod, impact story and the occasional awkward silence.

The best reaction I ever received was none at all. It came from another cyclist who had, over time, heard me casually mention diabetes in our conversations. He’d watched me check my blood sugar and observed me employ every diabetes device in my possession, and all without so much as a hint of interest. It wasn’t his own discomfort with my disease that kept him quiet, or any respect for my privacy. Simply, of all the things he knew about me, diabetes was the least interesting among them.

Different people have varying degrees of experience with diabetes and different levels of comfort when it comes to talking about the disease, and some diabetics struggle more or less to speak about what it is like to live with this illness as a constant companion. In honor of the upcoming World Diabetes Day, I thought it would be befitting to share the Nine Things You Should Know about Diabetes.

1.       There is more than one type, and the disease processes between Type 1 and Type 2 are very different. In some regards, it’s unfortunate that the two distinct disorders share a namesake. In Type 1 diabetes, the beta cells produced in the pancreas are attacked by the other cells of the body. Eventually, the pancreas stops producing insulin. Without insulin, the body is unable to remove sugar from the bloodstream and convert it to energy. People with Type 1 diabetes must check their blood sugar throughout the day and inject insulin. In Type 2 diabetes, receptor cells are unable to utilize the insulin produced by the body. This can happen for a myriad of reasons, but is often related to excess body weight and fat cells, or a sedentary lifestyle. Insulin resistance leads to less sugar being removed from the bloodstream.  Patients with Type 2 diabetes may need to use insulin, but can often manage the disease through lifestyle modifications or oral medications, or use other injectable medicines to maintain a normal blood sugar.

2.       There is no cure for diabetes. No juice fast, cinnamon oil, beet extract or raw diet will remedy my disease. While those who suggest otherwise are no doubt well-intended in their recommendations, it’s important to understand that diabetes management is more complex than any multi-level-marketing-scheme or recently viewed YouTube video. I trust these peddlers do not intend to be insulting, but it is seemingly offensive to hear superficial comment on something they don’t fully understand (after all, if they did have a grasp on diabetes, they would know that I can’t be cured by these “quick fixes”).

3.       Diabetes sometimes impacts our mood and our reactions to those around us. While it’s not really fair to blame bad behavior on disease pathology, swings in blood sugar can make someone with diabetes less than amiable. Irritability can be a side effect of high or low blood sugar in itself...and the frustration of not feeling quite right can make someone with diabetes angry, as well. Diabetes can be a disruption, and that alone can elicit an emotional response. Be patient and, when in doubt, ask what you can do to help.

4.       People with diabetes can live normal lives. Proper disease management is crucial to stay healthy and to feel good, but assuming that someone manages their diabetes appropriately, there is no reason that a person with diabetes can’t do all the things a non-diabetic might do. To translate: Steel Magnolias is a dramatic movie and not a documentary.

5.       In order to stay healthy, we have to use some needles. If that makes you uncomfortable, look away. Most diabetics will check blood sugar or inject discreetly, so it’s probably not a huge issue. And while some people might choose to politely excuse themselves from your presence before sticking a finger or drawing a syringe, others prefer to do this as needed without having to step aside. The kindest thing you can do is to do nothing at all. It’s really hard to manage diabetes when you feel awkward testing or correcting in the presence of another person. If someone is hesitant to use a needle in front of you, kindly reassure them that it’s no big deal.

6.       It is no big deal. I once finished a race, and whipped out my meter to test my blood sugar. I felt fine and, in fact, I was fine. I was a nice 108. That’s just about perfect. My competitor, however, came running over to me and inquired in a state of near panic as to whether I needed some emergency juice. She was, of course, trying to be kind and useful, so I gently explained that checking blood sugar doesn’t mean that something is wrong. Quite the opposite, in fact. Testing blood sugar is how we prevent things from going wrong, and it should never be cause for concern.

7.       Do not lecture someone on what you think they should be doing. It is no more or less healthy or problematic for me to eat a piece of pie than it is for you to enjoy the occasional bowl of ice cream. As adults, we can make our own decisions about disease management, and however well intended your commentary, it will no doubt come across as controlling.

8.       Go ahead and ask. I was at a party the other night, and a couple of friends asked me about diabetes…where I inject and whether I take my insulin on the bike, and how much I need to eat to feel good when I race. The questions were asked with genuine interest. This kind of discussion is always refreshing because it comes from a place of authentic regard. It’s not about selling me a product or judging my behaviors; it’s about learning more and trying to understand my situation. I welcome those interactions.

9.       Diabetes is just one part of my life. It’s a big part, no doubt. I think about diabetes every day. Several times every day. The first thing I do in the morning is check my blood sugar, and I check it again right before I fall asleep…and maybe ten times in between. It’s like constantly keeping the ambient air temperature at 72 degrees without the benefit of a programmable thermostat. But there is a lot more to who I am and what I do than what is captured by simply “living with diabetes,” and I really want people in my life to focus most of their attention on those things.