I have spent three quarters of my life with diabetes and because of this, it’s difficult to remember what life was like without it. As a newly diagnosed child, I tried to conjure up former feelings of wellness. I wanted to hold onto what it felt like not to be sick, but it was no use – the memory slipped away shortly after the hospital nurse had me inject insulin into oranges as practice for injecting into my skin. In high school friends asked me what it felt like to be a diabetic. I told them without insulin it was like my body was sugar-cured, burning, dry, lifeless, underdeveloped, cell-starved and on the cusp of death. And to make it worse, insulin was just about the most dangerous drug ever handed to a patient to use at home. My friends understood my challenges better than any adult. My doctors terrified and discouraged me. They told me I would never have children and I would probably not live past 35. It was then that I made a promise to myself to never give up. And with that promise I honor all the people struggling with diabetes that I have met along the way, including a childhood friend who died of insulin shock in his second year of college.
Fortunately, I’ve proved my former doctors wrong on both of their predictions. I’m 45-years-old and I have a beautiful daughter. I would be lying, though, if I didn’t admit that while I am still here, not a day goes by where my illness hasn’t challenged me. I must also admit that my life’s greatest luxury has been the ability to afford good care, which also entails careful budgeting and other financial sacrifices. All these years later, I’m older and wiser, lucky not to have any complications, but still continually fighting for adequate blood sugar numbers and hoping for the diabetes “pot of gold” cure at the end of the rainbow. But so what? I am one in a sea of millions. What has changed since I was diagnosed?
Lately, I have noticed that while expensive technologies and devices are improving, diabetes medical care and guidance are not. Even my endocrinologist, Andrew Drexler, acknowledges that care has declined in the last 10 years. I’m discouraged by the staggering growth of diabetes and by the declining number of diabetes specialists and the lack of general compassion for people with diabetes by the public, by politicians and even by the profession of medicine. So I wonder, do people with diabetes give up and neglect themselves because the world around them has given up on them, too?
My friend Robert is back in the hospital again. He retired five years ago, earlier than he planned because of triple bypass surgery. His surgeon blamed years of poorly controlled type 2 diabetes for his cardiac failure. Doctors told him he was very lucky to survive and his wife, grown children, friends and even members of his church parish all agreed.
“You’re so very lucky to be alive,” they said. “Thank God you made it.”
But now, lying in a hospital bed again, Robert isn’t so sure he’s lucky. Since the bypass surgery, his eyesight has diminished so much he finds it almost impossible to read and he can no longer see well enough to drive at night. Last year his doctor was able to save a toe from being amputated, but walking is still too difficult. The neuropathy in his feet and legs is so painful that he finds it hard to remain in a standing position for more than a minute, and he also can’t feel the tips of his toes. Shoes have become too painful to wear, but the threat of unfelt abrasions from walking in sandals is dangerous. Eating is nearly impossible due to gastroparesis, which in Robert’s case causes vomiting and diarrhea. He has episodes of extreme intestinal discomfort most of the time, and can no longer digest food without medication. He takes his insulin but sometimes feels too afraid because recently low blood sugar led to a bad fall. He’s worried it will happen again.
Robert has withdrawn from his family and friends and he is irritable most of the time. It wasn’t always this way. When he was diagnosed just after his 45th birthday he was an active adult who tried to stay on his medications and stick to a diabetic diet, but raising a large family and work got in the way. At one time he started to dip into his retirement fund for medications and health care. Now, worried about what will happen to his wife when he’s gone, he’s stopped that. Instead, he skips medications, doesn’t test his blood sugar and reuses syringes. Believing doctor’s appointments are too expensive and useless, he hasn’t seen a diabetologist in over a year. “Why do I need to pay someone to tell me I won’t live long?” he says. Sometimes his wife asks him how his blood sugar is and not wanting to disappoint her, he says, “just fine.” Yesterday he found it too difficult to breathe so his wife drove him to the emergency room.
Robert admits, “I just can’t do it. I’d rather be dead.”And I don’t blame him for feeling this way. How could I possibly judge him without being unkind? Yes, Robert has made some bad health care decisions along the way, but nothing extreme. Father, taxpayer, 40-year-career – he sounds like many, many American men over the age of 65.
Robert’s condition is like drowning at sea in the middle of a hurricane and being thrown an inflatable life-preserver for survival. I’m certain Jeremiah, who was diagnosed with type 1 at the age of nine, feels that too when he screams “I hate diabetes!” and runs upstairs to his bedroom to sob. He is thirteen now and his mother still can’t get him to change the site for his insulin pump alone or bolus on time before meals when he’s at school. His blood sugars run from shockingly high to near fatally low. He has been home sick more than he has attended school since he was diagnosed and he is no longer interested in his studies. “He is so thin that it’s hard to grab onto any skin for the injection site,” his mother said. His parents worry what will happen when he grows up and leaves home. They pray the means of managing the disease will change and improve, or that a cure will be found… otherwise they wonder if Jeremiah will survive a lifetime of insulin.
There are too many people like Robert and Jeremiah- some even more severe (although many people believe Jeremiah, who, because he is growing up with diabetes, has a better chance at accepting and managing his illness. But there are no statistics to prove this point). Robert, on the other hand, is one of millions represented in the media as the people with diabetes who cost taxpayers billions. They are withdrawn and they are invisible; frankly, they don’t want to be seen. They are quietly waiting to die, perceiving death as a better option than suffering through a life with diabetes.
What is the difference between those that manage diabetes and those that do not? I believe everyone has their own set of reasons and circumstances which tip the scale this way or that way. There is such an uncertainty with a life with diabetes, similar to what an HIV or breast cancer survivor might experience, and without support and guidance it can feel too hopeless to bear.
These days, from what I hear or read and what I receive from people who write to me for help, there is no obvious and easy choice for many patients when it comes to care- resources to manage diabetes are often limited because the tools required for good diabetes care are very expensive, and in many cases available health care is inadequate or nonexistent. And when you’re already sick, fighting for health care is very hard indeed. Often, there isn’t even a dedicated diabetes specialist within driving distance of a patient’s home. Endocrinology is not a profitable division of medicine, and there are not enough specialists to go around. Appointment waiting times can run at six months and general physicians are overburdened and may not have the experience to treat complicated cases. Too frequently poor diabetes health and helplessness lead to depression. Without adequate care, many patients just don’t make it; the health care system has failed them.*
The burden of diabetes isn’t Robert’s, or Jeremiah’s, or even mine. It’s everyone’s. The US has one of the highest rates of diabetes in the world. And I sometimes wonder how much higher the estimated 23.6 million diabetes sufferers reported in the US will have to go before President Obama and his administration start to require the appropriate agency to provide real solutions for the detrimental impact diabetes has made on public health. Diabetes is the 21st century plague. The burden of managing well or not at all is seen as the patient’s responsibility, but without support, adequate care, real prioritization and funding from world leaders, that’s not a burden the patient can bear.
* There are also success stories and a portion of the population with diabetes manages it well, but these individuals are the exception, not the norm. If you don’t believe this – just go to any urban diabetes clinic in any part of the US and have a seat in the waiting room. Take a book or something to distract yourself because it’s like watching victims of war. The irony here is that these are the patients who ARE going to the doctor.
Author’s note: The names of the two patients discussed here have been changed to protect their identities. Their stories are real.