Monday, October 1, 2007

New Link and more...

I started off saying in my last post that I was curious how others felt about the whole "positive thinking" adage as far as physical illness goes. During my on-line research I mostly found it being applied to cancer patients. There is some thinking that one can visualize their cancer away. My personal thoughts are that this type of suggestion does more harm than good and I found both doctors and nurses who would agree with me.

I do believe that there is a body/mind connection with illness...absolutely. Stress, for example, can cause a host of ailments and can contribute to or exacerbate others. Nobody is advocating being a miserable S.O.B. but neither should someone dictate positivity as a requirement for physical health.

There are some folk who can say what I am trying to say far more eloquently than I can and The Dinosaur Doc is one such person.

Here is his link to an article he wrote entitled, What could be wrong with positive thinking? I would absolutely encourage you to read it. What really got me was the quote at the end of a woman who died of cancer. When we talk about physical illness in our society, we use this battle imagery of people fighting a war. We describe the people who die as having lost their battle and the people who live as heroes who conquered their disease. I feel it is an unfortunate terminology. Everyone who has to deal with a chronic disease is a hero in my book regardless of outcome or outlook.

In our society we take things for granted. We toss around cliches as though they are gospel and don't think twice about, are we really comforting with our words? Are we helping or harming? Are we compassionate or judging? Are we sometimes only really trying to minimize another's pain so we don't have to think of our own? Advice such as "Oh just be positive" or "Get over it" or "Don't dwell on the negative" have very little actual value for either getting physically better or for providing emotional comfort. These sorts of statements only serve to make the recipient feel more isolated and unwilling to share. In addition, it places an unfair burden upon the person who has illness to feel guilty if they cannot feel a certain way or cure themselves with happy thoughts.

The following are two articles written about this topic, the first is by a doctor specializing in treating cancer patients and the second was written by a nurse also helping those who have cancer.



By Jimmie Holland, M.D.

"The Tyranny of Positive Thinking," by Jimmie Holland, M.D., is adapted from the recent book, The Human Side of Cancer, Living with Hope, Coping with Uncertainty, by Holland and Sheldon Lewis. Dr. Holland is a physician/psychiatrist who has counseled people with cancer over the past 24 years at Memorial Sloan-Kettering Cancer Center, in New York City.


The Tyranny of Positive Thinking

As a physician/psychiatrist who has counseled people with cancer over the past 24 years, I have learned a lot about the difficult things people have to cope with when they have any kind of cancer--the negative and frightening meaning of the word cancer (particularly leukemia or lymphoma), and the feeling that people look at them differently. A patient said to me,"I'm not Joe anymore, I'm Joe with cancer." And they must cope with the distress of symptoms of the illness and its treatments, which is enough in itself, but that gets coupled with dealing with the nagging fears about the future.

It began to be clear to me about ten years ago that society was placing another undue and inappropriate burden on patients that seemed to come out of the popular beliefs about the mind-body connection. I would find patients coming in with stories of being told by well meaning friends, "I've read all about this-- if you got cancer, you must have wanted it." Others said, "I've been told that my personality must have caused my cancer and I guess I just didn't handle stress right in my life." Even more distressing was the person who said, "I know I have to be positive all the time and that is the only way to cope with cancer-but it's so hard to do. I know that if I get sad, or scared or upset, I am making my tumor grow faster and I will have shortened my life." These people didn't come up these ideas on their own--they got them from many places in our current culture: books, tabloids, talk shows, and TV. These ideas have come out of interest in the mind-body connection, based on research showing that stress can affect the immune system. The connection is carried further: if stress affects the immune system, and the immune system has something to do with cancer, then stress must cause cancer. This oversimplified pop psychology is typified by an article in the National Enquirer about Jackie Kennedy. The headline was "Stresses in Jackie's Life Led to Her Death From Lymphoma." It is important that people know that research simply does not back up these ideas. The only way that personality becomes a factor in causing cancer is when your personality leads to a life style that puts you at greater risk of cancer, such as smoking and sun exposure, raising the risk of lung cancer and melanoma. Obviously, also important is the fact that your personality leads you to have a rational approach to health, like diet and exercise, and that you followup in a timely way any significant suspicions of cancer with a consultation and treatment.

I felt some one needed to advocate for patients who were having to deal with these negative attitudes and I set out to set the record straight in my recent book about the human side of cancer, outlining what is myth and what is reality, based on what we know from research on the mind-body connection and cancer. Barbara Boggs Sigmund, mayor of Princeton in the 1980s, wrote an Op-Ed piece in The New York Times that I very much admired for her courage to fight back when accosted with these attitudes. She suffered from a melanoma that developed in the back of her eye. In an article titled, "I didn't give myself cancer," she spoke of her rage at self-help books that suggested "I had caused my own cancer out of lack of self-love, a need to be ill, or the wish to die and that consequently, it was up to me to cure it." She spoke against the theory that "cancer cells are internalized anger gone on a field trip all over our bodies" or that "rah-rah-sis-boom-bah, I can beat the odds if I only learn to love myself enough."

The attitude that "you caused your cancer" is very much related to a common psychological method we use in dealing with a catastrophic event or illness, namely we "blame the victim." We look for a rational cause as to why it happened--often concluding that the person must have "brought it on himself." That allows us to say, "Well, it couldn't happen to me--it was his own fault." It produces a false sense of security that we can prevent events that are actually beyond our control.

So rule number one in coping is: "Don't believe you brought cancer on yourself." The research does not show that either personality or how you handle stress in your life raises risk of developing cancer. This is one of the myths that makes coping more difficult these days..

Rule number two is: "Don't believe that you have to have a positive attitude all the time and that sadness or worry will shorten your survival." This tyranny of positive thinking is also related to the "mind over matter" ideas of our society. It is unrealistic that as you cope with nausea, fatigue, and worry and sadness, that you can be positive all the time. Yet, zealous believers in positive thinking may make you feel guilty when you find yourself crying sometimes. There is no evidence that if you do become "down" at times, it affects your tumor. If you are surrounded by the "positive attitude police," tell them to get off your case and be realistic--and offer them The Human Side of Cancer to read to get the facts straight, separating facts from beliefs.

It is also important to remember that our ways of coping with adversity (and illness is just one more example) are as different as our DNA and our fingerprints-each of us copes in a unique way because of our genetic makeup, our temperament, and the events in our lives that shape how we cope and see the world around us. Some people are innately optimistic--the positive thinking idea fits them well-they see the glass as two-thirds full! But just as many others are pessimistic by nature--the glass is only one third full! I recall Ernie who never believed for a moment that his treatment for lymphoma would help--he went through each treatment, telling me that he wouldn't make it. If the positive attitude told the story, Ernie shouldn't have made it. But 10 years later, he is healthy--and just as pessimistic about life as he had always been!

The problem that comes from this paradigm is that if the positive thinker's illness begins to worsen, the immediate response is guilt that "I wasn't strong enough the fight the disease." This is an unfair burden for a person who has coped and with courage and grace. There are many other factors that determine outcome, many that we don't know. I have seen positive copers who didn't make it and negative pessimists who did--which simply says that personality and coping isn't everything.

Surely we need much more research in this area of mind-body, which is developing in the new, small field of psychoneuroimmunology. While stress does affect the immune system, there is no evidence that the blips produced are in the range of those that would affect tumor growth. We will know more in the future, but for now, the studies do not support the myths about psychological causes of cancer and the role of emotions in tumor growth. The mind-body connection is fascinating because people hold such strong beliefs about it. I have come to feel that it is very much like religion. There are people who are "believers" and all the data in the world couldn't shake their faith. "Nonbelievers" simply are those who would not likely believe in the mind-body connection, even if the data were produced.

I strongly advocate that people use whatever beliefs or activities they find helpful - like relaxation, meditation, religious and spiritual approaches. Prayer is likely the most widely used of all interventions to help in coping.

What matters in the long run is that you find a view of illness and way of coping that is comfortable. Whether it involves believing or not believing in the mind-body connection is far less important. We have found that how you cope will likely be similar to how you have coped with major problems in your life. Don't allow family and others to tell you that you are "doing it all wrong," and that you must be more positive and cope in a new way that is foreign to your natural style. The old adage, "Don't change horses in the middle of the stream," is quite apt here. If your way of coping starts not to work, however, it is wise to seek counseling with someone who is familiar with the problems of people with cancer, like the social worker, psychologist, or psychiatrist (when medicine is needed for anxiety or depressed mood or poor sleep.) They can help to reinforce your familiar and proven ways of coping and offer you some ideas about how to approach the problems of illness to make it less upsetting and a little easier for you to deal with them.

Bottom line--identify your own beliefs about the mind-body connection and use them as they are comfortable for you, based on your temperament and your natural ways of coping. Remind your family and your doctor that they are most helpful when they respect your well-honed way of coping and respect your need to express how you feel, even if it isn't positive!

This article is based on the chapter, "The Tyranny of Positive Thinking," in The Human Side of Cancer: Living with Hope, Coping with Uncertainty, by Jimmie C. Holland, M.D., and Sheldon Lewis, published by HarperCollins and available in local bookstores, Barnes & Noble and Amazon.com.
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Being positive
Many people with cancer feel that they should "be positive". You may also be told by other people to "think positive" if you feel low or tearful, or want to talk about a difficult topic like the chance of the cancer being cured or making a will. These comments are not always helpful to you - in fact, often they are very unhelpful.

Some people are afraid that feeling sad or having negative feelings may delay their recovery or make the cancer grow faster, or make it more likely to come back. This is not the case and it is natural to feel frightened, upset and sad when you have been diagnosed with cancer or are having treatment.

Even if you have finished treatment, you will still have times when you feel very sad and worried, and find it difficult to enjoy life.

When you talk to other people who have cancer, even the most positive of them will admit to low times, when they felt depressed and anxious. No one can be positive 100% of the time, so it is important that you do not feel that you must always stay on top of things, when you really want to say that you're finding it tough.

Being positive does not mean feeling happy and cheerful all of the time. It is actually a very positive thing to acknowledge when you feel tired, anxious, depressed or angry.

People with cancer have to deal with issues and situations that are very frightening and very challenging - and more than likely to cause distress and tears.

It takes great courage and strength to face some of these issues. Facing the issues, rather than choosing not to deal with them, is an act of great bravery. Positive thinking is not about avoiding looking at the negatives. There are a great many negative aspects of having cancer and dealing with its treatment:

It can be a life-threatening disease.
You may lose part of your body through surgery.
You may have changes to your body, such as hair loss, due to treatment.
You may lose some independence and freedom.
You may lose friends who cannot face up to your illness.
You may lose important work contacts.
You may have to make big changes to your life.
These are very real losses and will obviously have an effect on you, and the people close to you. They do matter and you have a right to worry about them and be upset by them.

Being positive also means that it is OK to cry and say how you feel when the going gets really tough, it all feels too much, and you wonder when it's all going to end. Tears are a natural response to distress - they may be a very important release for you.

Positive thinking means different things to different people, but generally it is about facing up to the cancer, confronting it and dealing with it. People do this in different ways.

Some will want to take a very active part in their treatment, reading all they can, surfing the internet, talking to lots of people, and becoming a very active participant in their treatment. Some people will be content to let the doctors and nurses give the treatment and trust them to do their best. Some people will want to carry on as normally as possible and avoid thinking about, discussing or talking about the illness and its treatment - they know what is wrong with them but prefer not to talk about it all the time.

There is no one right way to deal with cancer. Each person finds their own best pathway. If you feel tired and sad, it is good to acknowledge that and not feel that you have to change it. It is important to remember that all feelings and thoughts pass, and you will feel better at some time in the future.

Recently, many people have tried to find out whether positive thinking can make treatment more successful or prevent cancer coming back. This is a very difficult issue to research and is still not well understood. It is not known whether positive thinking directly affects the growth of cancer.

Although the development of cancer may be influenced by our thoughts, feelings and attitude, it is also influenced by many other things such as our environment, our diet, and our genetic and physical make-up.

It is important to remember this, because if you believe that you need to be positive to get rid of the cancer, you may think, if it comes back, that it is your fault because you were not positive enough.

Other people can also make you feel worse by saying that if you fight hard enough you can overcome cancer. If your cancer does come back or cannot be cured, it is not your fault: it is because cancer is a very complicated illness and modern treatments cannot cure all cancers.

Some research studies have shown that people who wanted to fight their cancer were more likely to be cured, or live longer, than people who did not feel so positive. This is possibly because people who can deal with cancer in a direct way are able to take more advantage of what is on offer in terms of both conventional and complementary therapies. However, this is not the same as saying that 'positive thinking' is a necessary part of your treatment for cancer.

It is important that you are able to talk honestly about how you feel, and cry if you need to. This can help to release tension and stress and can even bring you closer to the person you are talking to.

If you find it hard to talk honestly to people in your family it may help to find someone from outside to talk to, such as one of the Cancerbackup nurses, a counsellor, or a cancer support organisation

7 comments:

Lady Prism said...

I've heard about that belief being disseminated that in a way we cause our own illness. Cancer strikes the good, the bad, the young, the old...My 16 year old son's friend was diagnosed just last week. He has stage 4 cancer of the lymph nodes...He is a happy, carefree teenager...nobody expected this.

This is a very thorough and informative, straight to the point dealing with this aspect of positive thinking. I hope a lot get to read it. I learned so much. Thank you :>

BRAINCHEESE said...

It is wonderful to see you taking such big risks here on your blog...the true wisdom of self-exploration lies in the depth one chooses to plunge/sink and not in the jump itself.

Best to you,

Linda D. in Seattle

Casdok said...

Yes much food for thought, thank you

mdmhvonpa said...

EGADS! How am I expected to keep up with you!?

Larry said...

The more you dwell in the negative on any illness, or anything in life tends to magnify the situation.

Thus the more positive you look at an illness has to have a better effect on the severity of the disease, no matter how far the disease has progressed.

Radioactive Tori said...

I believe when people say things that sound trite, or seem to blame the victim, sometimes they are doing so to assure themselves that they could "never" get whatever disease the person has. Blaming the victim probably is not meant to be blaming, as much as a defense mechanism to help the other person deal with it.

I had cancer recently, so I know people say things that are cruel when you actually pay attention to the words of what they are saying. Luckily, most people tend to mean well, and just stink at expressing their feelings.

That being said, a positive attitude never hurt anyone, and I think it helped me make my cancer go much easier than if I had dwelled on the badness of it all. I don't believe it made any difference in the outcome though.

harkoo said...

I am having to read your thoughts this last week slowly, bit by bit, to absorb your thoughts--your mind is really flying and is very intense! By the end of the weekend, hopefully I will have been able to read it all! Remember, I am taking a class on the Soul as well, so my poor mind is reeling--In terms of attitude, my ms always got worse when I wasn't being true to myself or experienced too much stress that I had no control over. I am not so much afraid of my attitude-positive or negative-but rather blasts of stress coming my way.