Talking About Complications
Twitter summary: Kerri talks about the shame and stigma associated with complications and the importance of creating a network of friends and allies.
So often, diabetes seems to be thought of as a character flaw, not a disease. “You have diabetes?” It’s deemed your fault, no matter the cause, type, influence, or genetic component. The conversations about diabetes, and the words to describe it, are so loaded with judgment.
“Oh, your blood sugar is 216? What did you eat to make it that high?”
“You have complications? Did you not take care of yourself?”
I always think of Good Will Hunting, when the therapist (Robin Williams) is talking with Matt Damon, trying to impress upon him that the things in his life that haunt him are not always his fault. Over and over again, Williams repeats, “It’s not your fault,” until Damon eventually breaks down and cries, acknowledging for the first time that some of his demons are not his fault.
A friend sent me a link to that clip on YouTube after I was diagnosed with macular edema, which occurs when the blood vessels in the retina begin to leak into the macula, causing swelling and threatening your vision. Even though those words from Good Will Hunting were scripted and assigned to different circumstances, they hit hard. It sounds like a cheesy scene, but it’s powerful, as it resonates deep into the parts of yourself that you might be scared to confront or acknowledge.
When I received the diagnosis, my mind immediately revisited Google searches I’d done in the past about different diabetes complications, including charts of how and when I could lose my vision, and I felt terrible. Sad. Pathetic. And in the instant that the retinologist spun his chair back to face the computer screen, presumably to update my chart, I felt like it was all my fault. I didn’t work hard enough. I didn’t have health goals that were aggressive enough, and this diagnosis was the reflection of an apathetic attempt at diabetes management.
This feeling of “fault” followed me for a few days, until I realized something very important: I have always cared about my health and have taken good care of my body. Diabetes-related complications are the result of diabetes.
This wasn’t a carte blanche invitation to blow the doors off my diabetes, to start mainlining cake and quit taking my insulin. I realized that after twenty-seven years of type 1 diabetes and the hard-earned birth of my healthy daughter, I have worked diligently to make this disease something that doesn’t own or ruin me. I realized that after decades of diabetes, I’ve had good moments and bad. I’ve realized that I wouldn’t change a moment of the life I’ve had or the life I will have, if it means I will have the opportunity to keep “with diabetes” as a prepositional phrase that hangs off the end of a very long list of descriptions of me.
“It’s not your fault.”
My vision has not been affected, or not in a way that I can tell. I still have 20/20 vision, but I do notice that when my blood sugar is high, there’s a strange cloud to my vision,in the right eye. Nothing is obstructed, and I can’t call it a problem, but focusing is harder and things seem a little blurrier, just in that eye. My vision doesn’t feel affected when my blood sugars are stable and in range. But I worry.
As a kid, I used to read through an illustrated Mayo Clinic book of skin diseases that we had in our house. (Not sure why – no one was in medical school. Maybe it came with the set of encyclopedias we ordered. Either way, it was an awesome tool for embracing pre-digital age hypochondria.) Thumbing through the pages of maladies, I’d convince myself I had every condition in the book, and then some. The diagnosis of macular edema became a version of that, convincing me that every moment of blurred vision or tired eyes was tied directly to this new disease.
This diagnosis didn’t change how I managed my diabetes. It wasn’t a wakeup call to test my blood sugar more or pay closer attention to my numbers, because I’m already on that bandwagon, and have been for some time now. Ironically, my A1c has been at its lowest and most consistent in the last two years, making the diagnosis feel like a literal slap in the face. “Oh, you’re in-range? Hitting your targets?” BAM. I felt in control of my diabetes but not in control of how it could touch my life in the long-term. Some days, testing my fasting blood sugar and seeing 90 mg/dl feels like success. Other days it feels like “too little, too late.”
My husband tells me not to worry, but doesn’t encourage me to ignore the diagnosis either. When it came to scheduling follow up appointments and discussing the possibility of Lucentis injections (a treatment for macular edema), he was at the ready. “No matter what time or day the appointment is, I can bring you.” But I know this diagnosis unnerved him a little too. I saw his brows furrow. I saw the look that crossed his face, and one I’d never seen before: worry. Diabetes is something we’re used to, but adjusting to this complication and the thought of any future complications is new and difficult terrain.
Such a diagnosis doesn’t mark the moment when we give up, but the moment when we need to work even harder. Often, however, complications aren’t given the grace of being discussed, as we’re taught that they happen because “we did” or “we didn’t do” something. Diabetes is unusual in that way: the fault lies with the patient, not the disease.
“But complications are the direct result of uncontrolled blood sugars,” says the medical community. I don’t disagree. The DCCT trial showed that the best prevention against complications was, and still is, tight blood glucose control. But that is no guarantee. I don’t say that to absolve myself of responsibility, but to move forward in an emotionally healthy way in order to achieve the best physical health possible.
And therein lies the rub. How are we supposed to have the perseverance to screen for complications when we’re afraid to find out the results, because we are then blamed for them? We see people with diabetes climbing mountains and running marathons, but we also see people who are so physically compromised by this disease that we are afraid to associate with them, for fear of acknowledging the parts of our possible futures that keep us up at night. The faces of diabetes range from “I’m more than fine!” to “I’m dying,” and you can feel like you’re on either end of that spectrum on any given day.
Complications happen, and discussions about them shouldn’t be relegated to whispered fears in the bedroom after the lights are turned out. The language around complications needs to change from one of fault and guilt to that of perseverance and renewed hope. We, as a patient community, have the right to disclose our diabetes complications without being blanketed – and suffocated - by judgment. If a complication becomes part of our personal healthcare spectrum, we need to feel empowered to face this new health issue with confidence that there is life after this diagnosis, too. We should be met, by health care professionals and fellow patients alike, with the support and encouragement we need to not lose the reins on good health habits, and to be inspired to make new ones part of our regimen.
Kerri Morrone Sparling has been living with type 1 diabetes for over 25 years. She writes a much-trafficked diabetes blog, Six Until Me (SUM), and is an active member of the diabetes community. She is known for her tagline, “Diabetes doesn’t define me, but it helps explain me.” Dexcom is currently a sponsor of SUM, and through that relationship, the company provides her Dexcom sensors free of charge. For Kerri’s full disclosure, please visit http://sixuntilme.com/about/2010/03/disclosure.html.