The name of a disease
11/02/15 05:31
I suppose that as long as people have experienced disease and illness, they have sought appropriate names for their conditions. Because of the devastating effects of diseases, some names of illnesses bring fear to our hearts. I suspect that it is extremely difficult for a doctor to bring news of a cancer diagnosis because of the fear generated in the patient and family even though there are many different types of cancer, some with very positive survival rates. Just hearing the word brings to mind the many people we have known who have suffered and died with that devastating illness.
Other diseases are pretty good descriptors of the actual condition. Heart disease is self-explanatory. People know how important our hearts are to our lives and disease in that important organ is life-threatening.
And there are diseases with technical names that are not in our common vocabulary. These diseases send us to the dictionary or the Internet in search of some kind of explanation. Unless you have a family member or friend who has suffered from Fibromyalgia, for example, you are unlikely to know that such a diagnosis means. That disease is a challenge for doctors to obtain an accurate diagnosis because many of the symptoms are shared with other conditions and diseases. Things like muscle ache, fatigue, sleep disruptions, memory and mood issues often aren’t identified with major illnesses. We’ve been known to blame the victim of such symptoms as being lazy instead of seeking to understand their very real condition.
Then there are the diseases whose names carry social stigma. This is true of many brain diseases. It is almost assumed that such illnesses are signs of character weakness or some kind of self-induced flaw. Victims of mental illnesses and their families often have real difficulty enabling others to understand the serious nature of their diseases. These diseases don’t get the visibility or the funding afforded to certain other illnesses, even though they cause great pain and suffering and can result in the death of the victim.
Our attitudes towards disease aren’t caused by the names chosen for the conditions, but sometimes the names don’t help better understanding.
Over the past several months I have had a colleague in another city who has been disabled by Chronic Fatigue Syndrome. Plenty of us have had phases in our lives when we have suffered from a lack of sleep. Perhaps we were caring for young children or aging seniors and had our sleep interrupted frequently. Perhaps we became over committed in our work life and weren’t devoting enough time to sleep. There are several different ways in which we might experience fatigue. We were vaguely aware that our situation was at least in part caused by factors that we could control. Doctors, being busy like the rest of us, might be tempted to gloss over and not take seriously complaints of fatigue. But this disabling disease is more than just being tired.
It even has a serious medical name: Myalgic Encephalomyelitis. That’s a mouthful and not really helpful for those who want to understand what is going on. And that is part of the problem. The disorder hasn’t received the attention and the funding necessary for a clear understanding of the disease. It is not uncommon for sufferers of the disease to go years without a proper diagnosis.
Lets be clear. This is a disabling disease. Patients suffering from this disease experience profound and persistent fatigue. Even a simple task like getting dressed to go out can put a sufferer in bed for days. Memory loss and other symptoms can strike fear in the hearts of those who suffer.
Diagnosis is difficult. There is no simple medical test to determine whether or not someone has the disease. And there is no treatment regimen that is accepted by panels of doctors. There has been insufficient government-funded research for doctors to understand and treat the illness.
It has been estimated that anywhere from 836,000 to 2.5 million Americans suffer from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. And they still haven’t come up with a name that even elevates that condition from a “syndrome” to a “disease.”
A condition that leaves its victims bedridden seems to me to be a disease. A new name has been proposed: Systemic Exertion Intolerance Disease, or SEID. I’m not sure that name is much of an improvement. All of the scary diseases have one or two-word names: Cancer, Arthritis, Heart Disease, Plague, Rabies, Anthrax, Smallpox, Influenza, Ebola, Typhoid, Dengue, Hepatitis,Whooping Cough. Maybe we don’t take diseases with complex scientific names seriously.
Whenever I donate blood, the screener asks if I or anyone in my family has ever suffered from Creutzfeld-Jakob disease. I don’t even know what Creutzfeld-Jakob disease is, but it has a name that takes a bit of practice to pronounce. If one got that disease, heaven forbid, at least you’d remember the name of your condition. And, I’m pretty sure, you’d be deferred from giving blood.
Meanwhile, my colleague, and many others, suffer and are disabled by a disease that is not garnering much public attention, funding for research, and in general is not understood by doctors.
Laura Hillenbrand, author of many best-sellers including “Seabiscuit: An American Legend,” has suffered for years from the illness. She reported that at one point, over a two-year time she was unable to leave her home because she wasn’t strong enough to walk to the car. Despite her disabling condition, she continues to write and produce books. Imagine what we might be able to read if there was an effective treatment for here condition.
Our lack of understanding can only be addressed by solid research. And research often is not inexpensive. In the meantime, victims of the disease will continue to be disabled and resources will need to be provided to support them in their suffering. Treated or untreated, understood or misunderstood, the disease has a devastating effect on our society. We miss productivity and witness suffering.
While they are at it, I hope they can come up with a better name for the illness.
Other diseases are pretty good descriptors of the actual condition. Heart disease is self-explanatory. People know how important our hearts are to our lives and disease in that important organ is life-threatening.
And there are diseases with technical names that are not in our common vocabulary. These diseases send us to the dictionary or the Internet in search of some kind of explanation. Unless you have a family member or friend who has suffered from Fibromyalgia, for example, you are unlikely to know that such a diagnosis means. That disease is a challenge for doctors to obtain an accurate diagnosis because many of the symptoms are shared with other conditions and diseases. Things like muscle ache, fatigue, sleep disruptions, memory and mood issues often aren’t identified with major illnesses. We’ve been known to blame the victim of such symptoms as being lazy instead of seeking to understand their very real condition.
Then there are the diseases whose names carry social stigma. This is true of many brain diseases. It is almost assumed that such illnesses are signs of character weakness or some kind of self-induced flaw. Victims of mental illnesses and their families often have real difficulty enabling others to understand the serious nature of their diseases. These diseases don’t get the visibility or the funding afforded to certain other illnesses, even though they cause great pain and suffering and can result in the death of the victim.
Our attitudes towards disease aren’t caused by the names chosen for the conditions, but sometimes the names don’t help better understanding.
Over the past several months I have had a colleague in another city who has been disabled by Chronic Fatigue Syndrome. Plenty of us have had phases in our lives when we have suffered from a lack of sleep. Perhaps we were caring for young children or aging seniors and had our sleep interrupted frequently. Perhaps we became over committed in our work life and weren’t devoting enough time to sleep. There are several different ways in which we might experience fatigue. We were vaguely aware that our situation was at least in part caused by factors that we could control. Doctors, being busy like the rest of us, might be tempted to gloss over and not take seriously complaints of fatigue. But this disabling disease is more than just being tired.
It even has a serious medical name: Myalgic Encephalomyelitis. That’s a mouthful and not really helpful for those who want to understand what is going on. And that is part of the problem. The disorder hasn’t received the attention and the funding necessary for a clear understanding of the disease. It is not uncommon for sufferers of the disease to go years without a proper diagnosis.
Lets be clear. This is a disabling disease. Patients suffering from this disease experience profound and persistent fatigue. Even a simple task like getting dressed to go out can put a sufferer in bed for days. Memory loss and other symptoms can strike fear in the hearts of those who suffer.
Diagnosis is difficult. There is no simple medical test to determine whether or not someone has the disease. And there is no treatment regimen that is accepted by panels of doctors. There has been insufficient government-funded research for doctors to understand and treat the illness.
It has been estimated that anywhere from 836,000 to 2.5 million Americans suffer from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. And they still haven’t come up with a name that even elevates that condition from a “syndrome” to a “disease.”
A condition that leaves its victims bedridden seems to me to be a disease. A new name has been proposed: Systemic Exertion Intolerance Disease, or SEID. I’m not sure that name is much of an improvement. All of the scary diseases have one or two-word names: Cancer, Arthritis, Heart Disease, Plague, Rabies, Anthrax, Smallpox, Influenza, Ebola, Typhoid, Dengue, Hepatitis,Whooping Cough. Maybe we don’t take diseases with complex scientific names seriously.
Whenever I donate blood, the screener asks if I or anyone in my family has ever suffered from Creutzfeld-Jakob disease. I don’t even know what Creutzfeld-Jakob disease is, but it has a name that takes a bit of practice to pronounce. If one got that disease, heaven forbid, at least you’d remember the name of your condition. And, I’m pretty sure, you’d be deferred from giving blood.
Meanwhile, my colleague, and many others, suffer and are disabled by a disease that is not garnering much public attention, funding for research, and in general is not understood by doctors.
Laura Hillenbrand, author of many best-sellers including “Seabiscuit: An American Legend,” has suffered for years from the illness. She reported that at one point, over a two-year time she was unable to leave her home because she wasn’t strong enough to walk to the car. Despite her disabling condition, she continues to write and produce books. Imagine what we might be able to read if there was an effective treatment for here condition.
Our lack of understanding can only be addressed by solid research. And research often is not inexpensive. In the meantime, victims of the disease will continue to be disabled and resources will need to be provided to support them in their suffering. Treated or untreated, understood or misunderstood, the disease has a devastating effect on our society. We miss productivity and witness suffering.
While they are at it, I hope they can come up with a better name for the illness.