I was 18 years old, in my first year at Mount Allison University, in Sackville, NB. I hadn't been feeling well and had gone to the doctors several times through the year.
I was five foot ten and "looked" big and healthy. The doctors did not bother to test me for anything physical. They assumed I was either just homesick or was finding university too difficult. I was prescribed sleeping pills.
After losing around 40 pounds during the course of the year, I went home for March Break. My mother (our family had always lovingly called her "Dr. Stewart"), took one look at me and demanded to know what was going on.
In 1968, I knew almost nothing about diabetes but had heard of a couple of symptoms. Luckily, I did mention my suspicion to my mother. She took me to a doctor in Fredericton the next day. I had orders not to leave that office until I had been checked for diabetes.
Amazingly, even though I asked to be tested for diabetes as soon as he asked me why I had come to see him, the doctor began asking me about my relationships with my parents, my boyfriend, my friends. He asked me if I was finding university a little too difficult.
I answered his questions patiently for about 20 minutes. Finally I said, "Look, if you'll just test me, I'll leave. If I don't have diabetes, that's great, but I'd like to have the test."
After the results, needless to say, his attitude changed. I have a very high tolerance level for high blood sugar. Mine was well above the levels that would have put most people into a coma.
While the rest of the students returned to university, I went into the hospital for the first time since I was 5 years old when I had my tonsils out.
For whatever the reason, be it a weird metabolism or a pancreas that sometimes does and sometimes doesn't produce insulin, my blood glucose levels are not easily controlled.
MY NAME IS DEANNA. I'M A DIABETIC. I AM AND WILL ALWAYS BE A DIABETIC. I have been a diabetic for 27 years. I have felt guilty for 27 years. I have eaten things I was not supposed to eat. I am paying heavily for my transgressions.
DIABETES IS NOT A SIMPLE MATTER OF DESSERT DENIAL. IT IS A COMPLEX DISEASE CHARACTERIZED BY DEGENERATION, DISABILITY, AND DEATH. KNOWN AS THE CONTROLLABLE DISEASE, IT IS STILL NOT CURABLE. BUT DIABETICS NEVER GIVE UP HOPE AND LEARN HOW TO COPE WHILE WAITING.
No one seems to like to talk about the complications associated with diabetes. It is feared that concentrating on the negative possibilities inherent in the disease will produce a negative attitude. Yet those of us who are diabetic, live each day knowing the long-term prospects and dealing with the everyday problems associated with the disease.
Denial is not a healthy approach. The effects of diabetes are slowed by control, but it is still the third major cause of death in Canada.
It is the leading cause of adult blindness and amputations; it doubles the chance of heart attack; and it increases the risk of kidney disease.
Living with the daily stress of trying to keep blood glucose levels in control is a balancing act more death-defying than that of the tight-rope walker.
Insulin injections, monitoring blood glucose levels, planning food intake to make sure insulin is covered, at the same time as trying not to take in too many calories; trying to time meals and snacks to cover the absorption rates of the insulins; dealing with insulin reactions when they occur; making sure energy output and exercise is also balanced with insulin and food intake; is enough to make a new diabetic feel just a bit overwhelmed.
Yet, every year 60,000 people in Canada are identified as new diabetics. The current estimated number of diabetics is one of every twenty Canadians.
The Canadian Diabetic Association also estimates that when family and friends of diabetics are added, this results in one in five Canadians who are touched by this disease.
I began this section with some well-known phrases of confession time at Alcoholic Anonymous meetings. I have often felt that a support group would be nice where diabetics could, without judgmental reprisal, speak their feelings freely. Where they could admit to hating being a diabetic without someone talking about all the worse things a person could have.
It would be a place where they could admit to going off their diet. Where support was forthcoming from people who really understand how incredibly difficult it is, not to.
Every disease or disability demands adaptation. It ultimately demands acceptance and coping skills.
Rick Hanson is my hero. Not because he is gorgeous (well, that might play a small part!), but because of his courage.
I do not refer to the courage displayed in his physical feats, which is admirable in itself. I refer to his courage at admitting the anger and frustration he has felt. It was his courage and determination that lead him to applying a positive attitude for his own and other's benefit. It was by admitting his human emotions that allowed him to progress to coping effectively. Accepting the limitations and maximizing the strengths is the name of the game.
Admitting and airing one's feelings are the first step to accepting one's limitations. Many diabetics might argue they are not limited. I do not accept that as an honest appraisal of the conditions of the disease.
Like the physically handicapped, diabetics often fight lonely and sometimes desperate battles in isolation from one another. Because of misguided beliefs and in their efforts to keep family and friends insulated from concern, they often face the battles by themselves as much as possible.
This emotional isolation from others even spills over to a self-denial of their own feelings.
There are no ramps or specialized adaptive equipment to deal with the daily regime required of diabetics or for the physical problems that arise.
Even before the disabling complications occur, there are daily barriers to overcome. They are complex and just as challenging as physical barriers. Environmental adaptations do not solve the diabetic's challenges. Changes must be initiated, implemented, controlled, monitored, and maintained by diabetics themselves.
Considering these facts, this disease requires an emotionally healthy and positive approach. It also requires tremendous emotional support. Yet this has been sadly lacking. It may well be why many diabetics do not cope and adapt as well as they could or should.
Perhaps I am the only diabetic who feels that the psychological and emotional side effects of this disease are as important as the physiological complications. My intuition tells me I'm not.
I take 3 insulin injections a day and test my own blood sugar levels at least 2-3 times a day, sometimes, as many as 6-8 times.
At the age of 44, I have kidneys that function at "half-mast." I have had a heart attack. I have little feeling in my feet and legs and outer fingers due to nerve damage.
I have cataracts in both eyes and diabetic retinopathy that requires laser treatment every few months. I have constant problems with infections; have had blood poisoning in my toes and fingers.
I have had a diabetic ulcer (a gaping hole) on my ankle that continuously leaked ankle joint fluid for over a year during treatment.
Complications and infections in my gums demanded that all my teeth be removed. I was wearing dentures at the ripe old age of 39.
Circulatory problems have produced problems such as excruciating leg cramps. Damaged nerves in locations such as the inner ear, hands, feet and buttocks (those areas that send messages to the brain about spatial orientation) leave me with a very poor sense of balance and co-ordination, let alone pride.
My first baby was stillborn. After spending the last two months of my second pregnancy in a hospital bed with "bathroom privileges", I gave birth to my son. To avoid the fate of the first baby, he was taken a month early. He, though, is the joy of my life and my main reason for continuing the daily struggle with this incurable disease.
Dry, itchy skin that sometimes peels in layers in the winter months, frequent nausea, susceptibility to germs and virus'; depression and guilt; are other symptoms that must be dealt with.
I have watched myself go through personality changes that I was aware of, but could not control. Dr. Jekyll; Mrs. Hyde. At age 37, my depression led me to attempted suicide.
Normally sociable, withdrawal and seclusion have become increasingly favorite methods of facing the sometimes overwhelming-challenge of daily living.
Most people who know me may find it impossible to believe I am writing this. Covering-up and shutting-up are tricks of defense for the diabetic facing accusatory and judgmental attitudes. Many believe that if a diabetic has problems, it is their own fault. You are also supposed to feel lucky that you don't have something worse.
I hope that by expressing my feelings in writing that I do not cause harm. That is my fear. That is not my purpose.
I hope to enlighten and inform. I hope to dispel a few myths. I hope to free diabetics of at least some of their feelings of guilt. I hope that recognizing and accepting their true feelings will allow them final closure of their grief in the loss of their former life (whether they have had diabetes for two months or 30 years), and allow them to move on to acceptance and better coping. Some do this on their own, but many do not.
And I hope to make families, friends, and professionals, realize that control is not a simple matter of will power; and that diabetics need support, not judgement.
There are many disabling and fatal diseases, some with exotic names no one can pronounce, Some kill quickly. Some require painful and drawn out treatment. Some produce immediate visible signs or disability.
Some inflict large numbers. Some are rare. Some are treatable, some are incurable. All are stressful and produce heartache.
But the difference with diabetes is in the self-blame and guilt. It is with attitudes based on myths and misinformation. Attitudes toward this disease place the blame back on the person suffering from the disease when problems occur.
Without outward signs, this invisible disease has no sensational handicap to notice (at least not until the long-term complications set in). You can easily walk past 100 diabetics a day without recognizing they have an incurable disease.
The one complication of diabetes that seems to be almost totally ignored has to do with the emotional and psychological side effects involved in coping with this disease.
There is extensive literature available on the clinical, technical, and dietary, issues.
Diabetic clinics, professionals and associations tend to focus on the physiological aspects and nutritional management of the disease.
Until there is a cure one must control it as best one can. No one has to tell me that.
However, literature and information dealing with the emotional and psychological impact of this disease is rare and not stressed. Yet it is these issues which offer the key to successful coping and adaptation.
I believe that diabetics themselves, repress their feelings. Reactions of other people centre on attitudes that there are lots of worse things a person can have. (This is true, but not overly comforting).
One of the most difficult aspects of the disease from the diabetic's perspective, lies in the problems of guilt and blame.
Despite the large numbers of diabetics, I have never heard of studies that delve into questions about why diabetics often have problems sticking to a diet. The very expression "cheat" on your diet has definite implications.
Why do adolescents sometimes rebel and not only ignore the diet but refuse to take their needles? Why do many diabetics rarely bother to mention they are diabetic to co-workers or acquaintances? Could previous experience with judgmental attitudes play a part?
Why are diabetics of various ages often accused of being immature and behaving irresponsibly. "Well...if she/he had followed the diet, there wouldn't be heart, kidney, circulatory problems; nerve damage, amputations, blindness, etc."
Sticking to the diet does not avoid all long-term problems. Keeping blood sugar levels near normal is incredibly difficult for most diabetics.
Any infection; fluctuating hormones, (my blood sugars go totally bizarre a week before menstruation, then settle back down the day it begins); unplanned exercise; delayed meals and snacks; flues and colds; delayed needles; sleeping in late; travelling; all play havoc with control.
The diabetic brain demands food when blood sugar levels go down. When they go up, the brain thinks the body needs a quick fix of sugar because the body is not utilizing the food it is getting. So, in this situation as well, the brain demands food, preferably sugar. Is this complex? It gets worse.
One Sunday morning I got up and tested my blood sugar. It was 6.7, well within the normal range (my specialist had told me if I could keep it under 10, I'd being doing well). Since I wasn't hungry and it was still early, I decided to work on this article just for a while before I took my needle and had breakfast.
Einstein has said that time is relative. When I write, time doesn't exist. The next time I looked at the clock, it was, to my horror, three hours later. I rushed upstairs and checked my blood again. I hadn't eaten a bite, but because my needle was late, my sugars had zoomed to 22.9.
Such a simple act of concentration and dedication is normally considered admirable in most people. But dangerous for the diabetic.
Amazingly, last year, a ten year study (called the "Diabetes Control and Complications Trial) costing $165 million, "proved" that if blood glucose levels were kept close to normal, complications would be less severe.
If it were merely a simple matter of keeping blood sugar levels close to normal, it would be similar to not being a diabetic. Did it really require $165 million to prove this?!?
An analysis of this study reveals several pertinent points:
The problem of course, is living and working and enjoying life while keeping those glucose levels near normal. Injecting insulin artificially into the body with no natural monitoring device to turn it off and on, creates various problems.
The reasons diabetics go off their diet are a complex issue yet to be addressed by the medical community.
Diabetic diets are based on caloric intake to cover insulin injections. To remain healthy, everyone, especially diabetics, require vitamins and minerals to boost their ability to combat other diseases and for body systems to function properly. The problem with sweets is not so much their sugar content, but factors linked to the fast absorption and high calorie content.
I'm certainly not advocating that diabetics eat sweets. I'm merely adding to my argument about the complexity of the issues.
I have a terrible reputation for not staying on my diet. (This is confession time). Yet this is due to my blatant manner of allowing myself treats at the occasional banquet or social functions. However, these occasions occur about 15 times per year. For the remaining 350 days of the year, I do work very hard to stick to my diet.
In addition, frequent insulin reactions (I'm one of the lucky ones who can feel low blood sugar early), necessitate eating anything close at hand that is sweet.
Since I'm not about to announce over a loud speaker that I need a sugar boost to counteract a reaction, people assume I'm just going off my diet again. This can be especially true at banquets where my normal 5:30 supper is delayed to 7:00 o'clock or later.
It is also true when hectic schedules mean I miss a snack or am late for a meal.
During the night, I often have reactions. It is now known that the effects of exercise can have delayed effects and decrease blood glucose levels not only during, but also hours after you have finished exercising.
Especially during my working years, exercise was usually done in the evening.
When reactions occurred in the night, I would go downstairs, and being sleepy and just wanting to go back to bed so I could get up and go to work the next morning, I would grab anything that was quick and sweet.
Because I knew why I was doing this, I just assumed my husband would know. We had been married about 10 years before I realized (in a casual conversation), that he thought I got up in the middle of the night to "sneak" treats!
Why would someone who is intelligent, mature and responsible as a mother, housewife, teacher and volunteer worker, have immature feelings about diabetes or act unintelligently or behave in an irresponsible way toward this disease? As every diabetic knows, the consequences are not fun. One would have to be a complete masochist to put themselves through the hospital visits and complications just because of a "sweet tooth".
The picture simply doesn't match up. There are missing pieces to the reasons he puzzle somewhere. Professionals need to start asking some important questions. Instead of assuming that diabetics having problems are "cheating" (God I hate that word, the very terminology, still commonly used, implies guilt, blame and accusation), further study and awareness are needed of these complex issues.
Here's another fact. Normally, regular exercise helps to keep blood glucose levels better controlled. Just to complicate things a bit more, though, strenuous exercise when blood sugar levels are high will increase the sugar levels. Did I not say this was complex?
I was working on this article one night at 2:30 AM. My 14-year- old son came downstairs. He had awoken and couldn't get back to sleep.
Without thinking about what I was doing, I passed him the title and some of what I had written. Jokingly, I said, "Here, read this. This will put you to sleep."
After reading it, he passed it back. "This is really going to help me sleep, isn't it?"
Life for the family of a diabetic is no picnic either. Worry is not uncommon.
Not only I have to live with my condition. My family has to cope with the results of complications, hospital visits, mood swings, irritability, and the insulin reactions. The threat of a shortened lifespan or disability is no more of a pleasant thought for them than it is for me.
We do not dwell on this. Whenever possible, we all try, as much as possible, to not think about it. But when things happen, my family must deal with it too.
While insulin injections slow the process down, diabetes is a degenerative disease. Maintaining control is not easy. Lee Iaccoco's wife died of this disease in her early fifties, so obviously money doesn't help.
Advances have led to better control and monitoring of this disease and treatment for its complications. New discoveries that dispel myths and new recipes make the once stringent diet less overwhelming. There is still always hope for as cure.
Banting's discovery of insulin and how it can be injected artificially into the body, over 70 years ago, has kept many people alive and functioning for many years longer than they would have, without it. But that discovery has also had a negative effect as far as searching for a cure.
Research dollars tend to concentrate on methods of control when any diabetic would prefer cure. When I first became a diabetic I often read of how researchers were on the brink of a cure. Twenty-seven years later, these claims are starting to wear a bit thin.
People began to think of diabetes as controllable, and that problems associated with the disease were due to the diabetics lack of self-control. Cure seemed less crucial.
Rare, exotic or sexually transmitted disease provide more hype. Diabetes' controllable status, has been a blessing blackened by its lose of priority. Yet the statistics prove it is still disabling and a killer. Statistics prove that there is still no prevention and the numbers continue to rise. No one even knows what causes it, though a few theories exist.
* It is estimated that $2000/year is spent by each diabetic on supplies for control. This does not include prescription costs or over-the-counter drugs to cover the treatment of the many complications, or of hospital visits, or of consultation with specialists.
Looking at populations (Statistics Canada; 1991 census); the one in twenty figure; and multiplying the cost of just the supplies alone; we come up with some staggering numbers:
| Area | Population | # of Diabetics in that area | cost $/year just for supplies |
| Canada | 27,296,865 | 1,364,843 | 2,729,686,00 |
| New Brunswick | 723,900 | 36,195 | 72,390,000 |
| Moncton | 57,010 | 2,850 | 5,700,000 |
If you know the population of your province or community, you can do a quick calculation to find the numbers that apply to your area.
This is a common disease. It cares not who you are, where you live, how old you are, or how much money you have.
The figures in the above chart show that it is also a lucrative business for those producing diabetic supplies. Don't get me wrong. Until a cure is found, I'm glad they are available!
* (1997 update)
The $2000.00 per year is now very outdated. Not only have costs of supplies increased, but this amount would refer to insulins, needles, swabs. It would not include the blood glucose testing supplies now regarded as essential to control. The monitor is a one-time purchase (usually). However, test strips cost an average of a dollar each. If you test 3 or 4 times per day (365 x $4.00) this really adds up. Add to this the costs of the lancet device and lancets.
Diabetics need support, not judgement Diabetes is a disabling and deadly disease. If you don't like to hear that, I'm sorry. But it's true. Control is not cure.
Recently, in my hometown of Moncton, NB, efforts were made to establish a support group for diabetics.
The local Canadian Diabetes Association Branch had dwindled to a point where one remaining executive (the secretary - a diabetic with a diabetic mother), tried to keep the office running with the help of an answering machine.
I went to the first meeting of this support group. There were around 15-17 people there. Six were diabetics.
Moncton has a population of 57,010. Using the CDA's figures of one in twenty, this means there must be approximately 2,850 diabetics in this city. If one in five are touched by the disease, through family and friends, 11,502 people in this area are touched by the disease.
One has to wonder why the local CDA is struggling for survival. Why would efforts to start a support group be so poorly attended?
First, is the attitude of the public, including some family and friends. Diabetes is controllable. It is not as serious as other diseases. Problems can be averted if the diabetic acts in a mature and responsible way. Long-term disabling effects and death usually take years to develop.
In the past, (I admit I haven't been to a meeting lately), CDA meetings revolved around dispensing needed information but the tone was one where diabetics were "lectured to".
Sometimes, diabetics had to sit while family members (out of love and concern, I must stress) revealed their frustration and anger towards "cheating" diabetics.
While this focus may have provided a great support for family members, and allowed professionals to once again stress their perspectives, it did little to motivate diabetic attendance.
One already received lots of lectures from health care, medical personnel, clinics, and dieticians. One heard the frustration and anger from family and friends at home. One didn't have to go to a meeting to hear it.
A true diabetic support group would consist of diabetics openly discussing their anger, frustration, and fears. No judgements. No reprisals. No lectures.
A place where diabetics could get their feelings out in the open. A place where those who live it, can empathize with the difficulties. A place where you could admit to falling off the wagon, and agree with each other that continuing to try is our only hope. A place where honest support is forthcoming, not the accusatory, "You haven't been cheating on your diet, have you?"
I have driven myself home from many appointments, tests and treatments, fighting the tears that could so easily take over my life. I had no right to feel even the slightest twinge of remorse, because, it was, after all, my own fault.
I have lain in hospital beds fighting those same tears (and often losing the fight), because I did not want any more needles, any more IV's, any more tests. I did not want to feel or be treated like a criminal.
I cannot read this, my own writing without crying. It feels good to allow myself to express the feelings and thoughts that I have repressed for 27 years. There are definitely psychological and emotional complications with this disease.
I am not advocating pity or self-pity. I realize there are worse things I could have. But it's nice to freely admit that I don't like being a diabetic.
I do advocate lifting some of the guilt, blame, and self-blame.
I've been given 27 extra years (and hopefully a few more) because of the discovery of insulin. Without it, and the care and dedication of many professionals, I wouldn't be here to write this. I am grateful for that.
Putting my feelings and thoughts down on paper has been very difficult. Not writing it. But having it available for everyone to criticize and condemn.
I have, through the grace of God, reached a time in my life when what other people may say, will no longer be the end of the world for me.
To me it no longer matters what others may say. If even one diabetic reads this and feels their own feelings being confirmed and affirmed, I will be happy.
Hopefully all diabetics will say: "Yes, I have often felt the same way. But, I will continue to try to stay on my diet, no matter how difficult. I will continue to try to keep my sugars under control. I will continue to try to take care of myself as best I can. I will continue to hope for a cure without giving up.".
Update 1997
Since this article was written, I have had congestive heart failure (age 46) and bone deterioration that caused numerable broken bones in my feet from the stress of walking.
I know a cure will not help me much (except perhaps to make my last days/years more pleasant, since my body functions have been so affected by this disease and are irreversible. But I still want a cure to be found. My 18 year old son does not have diabetes and I have prayed every day since he was born that he never will. But what about his children?
My motives are not totally for my own, however, but for all those who now have diabetes, as well as for all future diabetics. It is now called an "epidemic". What about your children and grandchildren?
email: Deanna Stewart-Gaston
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