The Two Faces of Diabetes

Article Quote: "Anyone who says you can have diabetes and lead a normal life is letting everybody off the hook and robbing [my son] Joey of a future," says Joey's mother, Sandra Silvestri of Calif.

Archive Favorite! This article originally appeared here in October 1996.

| Mar 13, 2008

The table was set for Thanksgiving and all the family was there. Joey, the baby, was the center of attention. This would be the second Thanksgiving he had witnessed in his relatively short life. Somebody remarked that he looked thin, but Sandra, Joey's mother, thought that it was just a sign of growth. As the turkey and mashed potatoes were served, the family turned its attention away from the cooing baby to ladling piles of food onto plates. Joey didn't eat much that night, but kept asking for more to drink.

Joey's health got worse over the following days-he was vomiting and looked pale. On the following Monday he slept in late. Sandra didn't want to wake him. When she entered Joey's room late in the morning, she found her son in a state of shock. He was almost blue, his lips drawn back in a grimace, his breath shallow. She rushed him to the hospital where it took about half an hour for the nurses to figure out that Joey had diabetes and was suffering from hyperglycemia. Joey was lucky enough to recover, but not before his and his parents' lives were changed forever.

"It was like a new baby was born," Sandra Silvestri says. "I had a new baby, a baby with diabetes.

The Silvestri's story is not unusual. Sandra did what every other terrified mother of a child with diabetes does-she panicked and tried to consume every piece of information available about diabetes. Unfortunately, the more she read, the more terrified she became. She found all the information overwhelming. "I put my head down and tried to survive," she says. With every new complication discovered, she became angrier, until she was mad at the entire diabetes community, resentful of anything related to diabetes.

Silvestri's anger lasted until she learned to channel it into something productive. She is now using her knowledge to produce a television documentary about diabetes called "Time Bomb." The documentary focuses on the sobering complications of diabetes and the need for a cure.

When she speaks about the documentary, a hint of anger swells in her voice. She thinks the media spends too much effort attempting to make people with diabetes appear "normal." According to Silvestri, the only way the public will take the disease seriously is by showing its debilitating complications.

"Anyone who says you can have diabetes and lead a normal life is letting everybody off the hook and robbing Joey of a future. The technology we have now is not good enough. I don't want Joey to live a life with diabetes; I want to find a cure. Diabetes only takes from people's lives and I hate it," Silvestri says.

To show how serious diabetes can be, Silvestri joined Pam Fernandes to speak in front of members of congress at a Diabetes Summit in May of '96. The Summit drew members from all walks of the diabetes community to speak in front of congressmen and women, legislative aides, community leaders and the media. Fernandes was diagnosed with diabetes when she was four years old. She was declared legally blind at 21. She has now had 30 operations, with a kidney transplant in 1987. She was chosen to represent the 16 million people with diabetes to show the physical toll diabetes can inflict on a body.

Fernandes told the audience that unlike other people with disabilities, she was born healthy and in a matter of 20 years, diabetes changed her life. She says it's difficult to have to continue making adjustments to her life-to lose her sight, to become infertile. Losing these capabilities has made Fernandes question what she still can do, and the answers she has received from the public have fueled her advocacy campaign.

"People tell me I shouldn't have to work, that I should stay home and rest. They want to cut my steak for me. The public has low expectations for people with any kind of disability. We all must raise our expectations of what can be done and we have to stretch to reach those expectations," says Fernandes.

Misdirected Solutions

Many patient advocates for diabetes believe that diabetes has become a disease too profitable to cure. Diabetes maintenance has created an industry predicted to surpass $5 billion by the year 2001. David Groves, who leads the chatline Diabetes Forum through CompuServe, and has had type I diabetes for 43 years, believes that the business community intentionally focuses on the maintenance rather than a cure for diabetes.

"Diabetes Forecast comes out and says, 'Little Johnny has diabetes, but don't worry, he's going to be all right.' It's just not true. Little Johnny is going to die of diabetes," says Groves.

Diabetes Health board member Joan Hoover shares Grove's cynicism, though her anger over time has mellowed. When her daughter was diagnosed with diabetes 30 years ago, Hoover began a fund-raising campaign to find a cure. She found her greatest success when she went to Las Vegas and convinced Wayne Newton to donate the proceeds from five of his shows towards diabetes research. The benefits raised $500,000.

But after years of fund-raising, Hoover has become frustrated. Every year scientists would say that a cure for diabetes could be found with more money. But Hoover never knew where the money went after she handed it over. A cure has yet to be found, and Hoover doesn't know if scientists are any closer to finding a cure than they were when she began. Yet articles about people with diabetes continue to emphasize the success stories without showing the darker complications of the disease.

"People always complain to me that they can't possibly match the lives of those shown in Diabetes Forecast," says Hoover. "The reality is that many people's lives are much tougher, and those people aren't highlighted by the media."

In the past the ADA and Forecast have been somewhat hesitant to portray the darker side of diabetes, concedes Jerry Franz, vice president of communications for the ADA. But that has changed, Franz says, and the ADA's policy has shifted to one of exposing the seriousness of the disease.

But there are other problems. Hoover and Groves point to the historic DCCT study as a prime example of how funding for diabetes research has been misappropriated. The study was the largest in diabetes history, taking ten years and using $250 to $300 million. Instead of finding a cure, "tight control of blood sugars" was the DCCT's answer to diabetes. Groves calls the study a deliberate exercise to avoid spending money on research for a cure.

Yachmiel Altman, a software designer for Information Builders in New York, says that when the DCCT results came out, he and the people he knew with diabetes considered it a joke. "We thought it was hysterical. They spent $250 million to say that people had to control their blood sugars? I had been doing that since I was six years old," says Altman.

How Do I Present Myself to the Watching World?

Gary Kleiman, executive director of medical development for the Diabetes Research Institute at the University of Miami, divides the ways people cope with diabetes into two categories: those who look at their lives positively, but shield themselves from the grim implications of diabetes, and those who view their lives negatively, but perhaps more honestly.

"I think most people would rather keep their heads in the sand," says Kleiman, who has lived with diabetes for 36 years. "Who wouldn't? What person, with or without diabetes, is ready to contemplate their own death? It's too heavy. People would rather look at the bright side and work to make their lives as productive as they can."

Kleiman says that once people have learned to accept the fact that they have diabetes, the natural reaction is to resign themselves and make the best of it. They don't want to deal with feeling different. People with diabetes often overcompensate to make sure that they are just as good as anybody else.

"A person with diabetes, like anybody else, wants to promote his or her positive qualities. If diabetes is considered a defect then a person with diabetes will naturally downplay that defect," says Kleiman.

Unfortunately, until a cure is found, diabetes will remain a part of a person's life. Whether people choose to wallow in their own misery or ignore the problem entirely, diabetes does not go away. Diabetes Health board member William Polonsky, PhD, CDE, makes the point that a person can complain all his life about diabetes without making the disease any easier to live with.

"Diabetes is like an unwanted guest who won't move out. You can complain to every person you know about what a crummy roommate you have, or you can do something about it," says Polonsky. "You can get perspective, you can find humor, and you can find an adequate way of compromising."

Groves looks at this "make the best of it" approach as a waste of time. He says that anyone who makes any claims that diabetes changed his life for the better, or even anyone who claims to have led a normal life with diabetes, is fooling himself.

"I've climbed the Great Wall of China. I've seen priceless Faberg_ eggs in Russia. I've done a lot of things in my life no one even dreams about, but I could have done them a hell of a lot better without diabetes," says Groves.

Exemplar or Victim?

Fundraising groups must walk a fine line when presenting the diabetes community to the public. As Hoover says, she can go to a company such as General Motors and describe diabetes as a terrible disease with ghastly complications, and ask for money to find a cure. Then she may go back the next day to General Motors and present the person with diabetes as dependable as well as productive, and ask General Motors to give the person with diabetes a job.

According to Hoover, the only mistake a person can make is to attempt a common voice for the diabetes community. No single image of the diabetic exists. The only way to view the community is person by person.

"Diabetes is a democratic disease. For every one of the 16 million, you'll find another image, another story," says Hoover.
Tell Me a Happy Story

Silvestri and Hoover sit together in the pressroom, taking a break from a long morning at the 56th Annual Scientific Sessions in San Francisco. The lights are bright, the ceiling high, suggesting endless possibility. While the convention roars on outside the door with all the razz and glitter of a carnival, the women speak to each other quietly.

"Can you imagine what would happen to all those people out there if somebody suddenly found a cure for diabetes?" Hoover asks with a sly smile. "They would all be out of business."

The women have something in common. Both are fighting for their children against a disease they don't have. Silvestri has been at it for four years now while Hoover has been campaigning for 30. Silvestri's son, Joey, is now six-years-old, a healthy kid in every way except that he has diabetes. Silvestri is not fighting to end Joey's six shots of insulin a day. She is fighting against the ghost of "what could be": the blindness, the amputations, and the kidney disease her son might have to face.

"This is not my disease," says Silvestri. "These are not my issues. But somebody has to be brave."

When Hoover talks about her daughter's case, she does not refer to "what could be." She acknowledges what she has seen-the complications touching her own life. When she recites the list of her daughter's complications, the 20 surgeries, the two kidney transplants and the blindness, the angry blood subsides from Silvestri's face. The edge in her voice catches and quiets to a whisper, until all that is left are tears.

Hoover holds Silvestri's hand. She wonders, as she's wondered before, if she has spoken too freely about her daughter. Her daughter's story, with its long list of complications, does not happen to everyone. Though she wants to speak honestly about diabetes, she worries about presenting a laundry list of possible things which may go wrong.

Hoover now has a granddaughter who has had diabetes for three years and a daughter who has had it for 30. Hoover has begun the cycle for the second time. She says that people think because she has raised a daughter with diabetes, she can tell them how to make life easier.

"They want to hear a success story," she says, "but it's a story I'm not sure how to tell."

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Categories: Blood Sugar, Depression, Diabetes, Discrimination, Food, History, Inspiration, Insulin, Personal Stories, Type 1 Issues


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Comments

Posted by Anonymous on 14 March 2008

It would have been interesting to post a follow-up to the article - interview the same people...has anything changed in the last 12 years? I think not. Although I don't subscribe to the conspiracy theory.

Hopefully encapsulated porcine islets in humans will help bring euglycemia to more people in the near future. Now there would be a reason to write a new article.

Posted by Anonymous on 14 March 2008

Best diabetes article I have ever read. I like the honesty. personally, Im sick of hearing how close are to a cure...I have type 2 so things are significantly easier for me than someone with type 1...who has it easier than someone with a child that has type 1...i will stay as positive as I can, and I understand why the positive is out there,,,but read this article closely again...this is the truth.

Posted by Anonymous on 14 March 2008

I'm a Type 1 diabetic with 42 years of diabetic living. Yes, I have complications. I agree with every word this article said. Big business is making too much money off of us to allow a cure. Please encourage people to donate money to diabetes research that goes to a cure rather than treatmentsthat just prolong the wait

Posted by Anonymous on 14 March 2008

This article is horribly depressing. There are people that have lived full lives with diabetes. As mad as the subject's mother is about the ADA and other organizations only telling one side of the story she does the exact same thing, maintaining that nobody with diabetes has lived a normal life. I personally know three people that have had the disease for 50 years without any problems and they would disagree with the statements from the mother. A cure is needed, but until then we have to use the tools available to make a good, normal life and not throw in the towel.

Posted by Anonymous on 15 March 2008

I'm diabetic and have hard time facing this fact. reading about it so much and hearing what "should be" dones from everyone -- professionals, doctors, friends, etc... expecting to see what would happen -- not able to imagine what could happen -- I finally witnessed a diabetic episode that had occurred for one of the women guests for the Big Brothers reality show. Watching what she went thru when she nearly became comatose has opened my eyes. Ever since seeing this particular episode (Episode 9), I've finally came to terms of facing diabetes and doing my best to take action and keep at it without giving up. I've gone
and had my eyes checked, gone to the dentists, now conjuring up the courage to go see a kidney specialist. Once I get past the hurdle of seeing these many specialist I believe I can handle it. But my problem is that I know I have to do it. I have a tendency of giving up. -- deep down I know I have no choice -- I have to continue with this regiment. There's no end of the line for this non-stop race for a cure.

Posted by Anonymous on 15 March 2008

This article brutally depicts the "other side" of diabetes, but remember, there are TWO sides. Diabetes is terrible, yes, and there are nasty complications. However, if Joey's mother always sees the black side, Joey will grow up feeling he is going to die. People should view the disease two ways, the complications as a warning and the success stories as a promise of what diabetics can do to make their lives as normal as possible. I'm not saying that diabetes isn't horrible- I'm a Type I myself- but it exists. Since there is no cure yet, people must deal with it as best they can.

Posted by Anonymous on 15 March 2008

I have a granddaughter with diabetes and I feel exactly the way these women feel. I truly believe that because corporations, organizations, foundations and the medical field are making multi-billions of dollars of off diabetes, there is not case for a cure. Only managing the disease is exceptable.

Posted by Anonymous on 17 March 2008

Posted by Anonymous on 17 March 2008

I am a Diabetes Educator in a small community hospital. In the past 1 year I have known personally 3 people, all in their 30's, in our community of 20,000 people who have died from diabetes. their lives were not normal. These are sobering numbers in this small community. More sobering because I also have Type 1 diabetes.

Posted by Anonymous on 17 March 2008

I am 34 years old and was diagnosed with Diabetes at age 4. What bothers me the most is that I see so many things on Type 2 Diabetes. No one even knows about Type 1. The general public needs to be educated about Type 1 diabetes. Media and medical organizations have made Type 2 Diabetes so well known and all you hear is how weight problems etc. lead to Diabetes. But what they don't say is Type 1 diabetes is not because of those factors.
Someone actually said to me once, it's too bad you didn't eat properly when you were a little kid. Maybe then you wouldn't be a diabetic. My mouth dropped open because I couldn't believe that is what people think about Diabetes, that I overate when I was 4 years old and that's why I have Type 1 diabetes.
They don't realize that Type 1 is just the luck of the draw and we had nothing to do with why we have a non-working pancreas. I would like media and Diabetic organizations to focus on Type 1 Diabetes because that is what we are trying to find a cure for. I volunteer with JDRF in Canada and hope that one day all of the work being done finds a cure for all of us with Type 1 Diabetes.
I feel a little differently than the woman in the article. I like to see Healthy Diabetics living healthy lives. It motivates me to continue bloodtesting 6 times a day. I want to be as healthy as I can and as much as Diabetes is difficult, and there are days when I am so frustrated I know that as long as I keep my bloodsugars in good control, I will be able to live a long and healthy life.
With that being said, a part of me always worries that as time goes on, I may experience some long term complications as a result of diabetes. But, my hope is, as long as I keep doing what I'm doing I will be ok. I have to think that way otherwise I would give up today.

Posted by Anonymous on 23 March 2008

What makes my blood boil is the fact that we Type 1 diabetics are somehow made to feel that had we behved ourselves we wouldn't have any complications. When will people realise that our bodies are not automatons and react in different ways to non-diabetics and it is quite difficult to balance out food, illness, grief, temper, exercise and so on with insulin amounts injected. Also not all type 2 diabetics have not all led an unhealthy life, and are lazy or obese ets., if they didn't have the genetic disposition for diabetes it would n't matter what they did - they would not get diabetes.
There should be more understanding and less criticism.

Posted by Anonymous on 24 March 2008

As a 22 year old type 1 diabetic who has had the disease for over 12 years, I have gone through many of the emotions felt by the women in the article. Yes, it can be incredibly frustrating at times. Yes, complications can occur that greatly affect how someone lives their life. But diabetes (type 1 and type 2) needs to be looked at as part of the bigger picture of society.

Diabetes can be managed properly if given the right tools and dedication. I understand that is not possible for every diabetic but treatment options exist. Before lamenting a ruined life, think about those who incurrable cancer or similar afflictions given months to live and no chance of treatment. Think about the hopelessness they face knowing nothing can be done. Managing your life in a different manner than a nondiabetic seems to be a heck of a lot better option than facing certain death.

That being said by no means ignore the uglier side of diabetes but remember how far medicine has come. Remember how relatively fortunate you are to be able to read/write an internet posting instead of suffering from the disease in a third world country where a treatment might not be available.

Posted by Anonymous on 28 March 2008

I strongly agree about the media messages that diabetes is something fat, lazy people get. One day they mention a new diabetes gene that's been discovered, next day back to the obese=diabetic, it's-your-fault message.

What a waste of all the awareness campaigns and the expensive research (funded by donations from diabetics and their loved ones). We just need to skip dessert and we'll be cured. I wish!

Posted by Anonymous on 28 March 2008

Some parts of the article are so pessimistic, almost suggesting it's not worth striving for good control, just keep hoping for a miracle cure and blame conspiracies if it doesn't happen.

Isn't it better to keep yourself in the best shape possible, so when a cure comes along you're still around and able to benefit from it? Otherwise why even bother taking your medication when you could save all the hassle and just fall into a coma and die? (You could say an organ transplant is a 'cure' e.g for several diseases - but what if you're not fit for an anaesthetic? Personally I wouldn't want a transplant without an anaesthetic!) Believe me, the informed, motivated people will be preferred for the expensive new 'cure', not those who can't be bothered or are about to succumb to complications.

I realise effort doesn't necessarily equate to good control, I've certainly had problems in this regard, but that's no reason not to try.

Posted by Anonymous on 28 March 2008

I think the ADA is full of themselves. I have been type I for 33 years and attended an ADA sponsored resident camp when I was younger. I went back as a counselor in 88. By 2001 I was on peritoneal dialysis and had two toe amputations. I offered to help with the camp because I had time on my hands and truly wanted to help. They were all for it until I told them "Oh, by the way, my big toes are amputated and I have to do peritoneal dialysis four times a day." All of a sudden thhey were not interested anymore and said they would call me back. Of course they never did. I would never have tried to scare any of the children, but the complications are real life. "Boooooooo!!!" to the ADA.

Posted by Anonymous on 1 May 2008

I have been a diabetic for 31 years. As far as "a normal life", I'm not sure what is meant by that. Although there are many accurate things in this article, focusing on the positve aspects of living with any disease is better than being miserable obsessing about all the negative things. I have seen significant changes in the way Diabetes is treated during my life so far. I am very thankful for the strides that have been made since my initial diagnosis at age 5 when I was having to uriniate in a cup several times a day and test my urine in a test tube (i.e. blood testing machines, smaller needles, insulin pumps, medication for potential complications, etc.). I am not trying to downplay the complications that can occur but diabetes is a far more manageable disease than many others. I have led a relatively healthy life so far, have had two healthy children without complications, and plan to continue on this path.

Posted by Anonymous on 2 May 2008

Reading this article has left me in a quandary. I can't decide who has the more difficult opinion for me to accept. It may be Gary Kleiman who says that those of us who live our lives positively are not being honest. And those of us who live our lives negatively are being honest. My comment for that is, absolute garbage. I have diabetes. So what? I have two children with diabetes. I have two grandchildren with diabetes. I have other family members with diabetes. For each of us the diabetes is treatable. Our entire family has made many changes. All of them are to make each of us as healthy as we can be. There are many difficulties in life. If a person stops to throw a fit eveyt time something is difficult, no one gets anywhere.
Conspiracy theory? What about the other autoimmune diseases i have? Are those conspiracies too? They are not treatable. My diabetes is.
We have a 9 year old in the family with cancer of the brain stem. Now that is truly a tragedy. He has had surgery twice and radiation and it is NOT going away, nor is it treatable.
I am sorry for all those of us with complications. I am sorry anyone has to have diabetes. I am sorry that anyone has any disease Difficulties are a part of life. None of us asked for anything. I wish that at least two of my other autoimmune diseases could be treated. But as far as I am concerned, anger does not handle anything. I believe that each of us should get up and do the very best we can.
My heart goes out to the parents of small children with diabetes.
I feel the most anguish however for children with non treatable cancer. For them I will do everything possible to make the remaining part of their lives as good as possible.
For myself, I will never count the insulin shots, the fingert sticks or the diet as too difficult. For my children and my grandchildren I will not count the diabetes as too difficult. I am deeply grateful it is treatable.

Posted by Anonymous on 8 May 2008

I was forwarded this article by a fellow health care provider. I too have a child with type 1 diabetes, and I too would like to see a cure at some time in the future. Unfortunately, like many other autoimmune illnesses and illnesses which affect the immune system, we do not currently have the technology to effect a real cure. I know that there are some very intelligent people out there who are working in labs to try and invent this technology, but at this time it does not exist. My issue with this article is the apparent whining that is collectively occuring by parents of children with type 1 diabetes. As a health care provider, I see children and adults with many different types of debillitating illnesses, both chronic and acute. I am sure no parent asks for thier child to fall ill, under any curcumstances. With that said, type 1 diabetes affords most (not all) children an opportunity to lead a mostly normal lifestyle, with a long life expectancy, although this does not come without a price. The price is due diligence on the part of the parents while the child is young with respect to maintaining good glycemic control. If this diligence interferes with their otherwise perfect life, then I shed no tears. My suggestion is to trade places with one of my patients parents. Perhaps the patient with acute CP, or MD, or an acute chromosomal disorder. Life is far more complelling for them. No one asks for a chronic illness. People get them. We hope that researchers will one day cure all illnesses. Until that time, I believe we must work hard at maintaining optimum health as best we can, and support those who are developing technology to both maintain health during this illness and find ways to cure it. Whining and complaining is devisive. Looking forward toward complications is negative in my mind, as many people develop these problems who do not have diabetes at all. Channeling energy into positive attitudes and encouraging good maintenance will inevitably be more beneficial to both our children and all patients with type 1 diabetes.

Posted by Anonymous on 20 August 2009

Yes! Finally! Someone tells it as it is. I have felt that I was the only one who felt this way. In my experience living with diabetes is like living with a jeolous spouse; one has to constantly be aware of it. One never has a moment absolutely free to devout to the things and personal relationships which life worth living. I hate the judgmental attitudes of the healthy and now find myself resenting the self-righteous, morally superior tones of my "just get over it" fellow diabetics. Perhaps some diabetics just have it easier than others, so why should they be judging the rest of us? I was already suffering from depression before I became a diabetic. Having diabetes and depression is like going into fight with both arms tied behind your back--how am I supposed to win? And simply constantly striving just to survive in an indifferent world is not a meansingful human existence. The religious conservatives infuriate me. For them and their "intellentigently designed" universe diabetes and depression are either a punishment from God for some sin I don't remember committing or a moral challenge I am apparently failing. I remember my father, who never was seriously ill in his life, used to chide those with chronic illness for not bearing our trials without whining about it. He also could not see why anyone should be required by the ADA to hire the disabled--he took the side of the healthy employers over against his own diabetic children--again typical religious and political conservative. Then, the last three months of his 92 year long life he found himself in a nursing home and refused to receive Communion because God wasn't quick enough to "take him home." Welcome to the club, Dad.

Posted by Anonymous on 24 August 2011

My name is Sam and I was 4 when I was diagnosed at the end of 1977.

I do feel very lucky that I haven't had the problems Fernandes has and I have a healthy 10 year old.

I was very fortunate that I got blood testing in early 1980, which really transformed how effectively I could estimate my insulin doses. But it's really hard work and it does get in the way and not necessarily the treatment.

Managers are often fine with it until you're asking to be excused because a meeting has over-run. Suddenly you're pulled from meetings and even off projets. When I was pregnant the project I had been working on for 30 months was given to someone who hadn't finished college yet!

It does sort the wheat from the chaff when it comes to relationships as many men don't want the hassle :-) so it's not all bad.


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