Salon readers sound off about chronic pain and childhood obesity.

Published April 19, 2005 7:08PM (EDT)

[Read "Head Case," by Andrew O'Hehir.]

Thank you, Salon! Andrew O'Hehir's interview with Paula Kamen has me crying at my desk. I was married to a woman who suffers from a debilitating case of CFIDS. Having people question its legitimacy has made her awful disease doubly tragic. "Head Case" is one of the few articles I've seen in a mainstream publication that has taken the related cluster of diseases like CFIDS seriously, and the only one that has conveyed any sense of what people suffering from them endure -- both from their own bodies and from the people around them.

I recognized so much in Kamen's comments: the journey through the maze of healthcare providers; the grasping for every treatment that might help; the combination of ignorance, arrogance and sexism found among many in the medical profession; the way people suffering from these diseases are mocked in media and pop culture; the way they come to question their own physical experiences; and finally the necessity of making some kind of peace with one's body and one's ailments. After years of watching someone I love suffer not just from disease, but from humiliating treatment in the medical and insurance system and the knowledge that many people don't see her illness as "real" -- it's a wonderful feeling to read the words of someone who gets it.

Thanks to Mr. O'Hehir for a well-informed and sensitive interview. I'll be stopping to pick up Kamen's book on my way home.

-- Jeff Silverman

At 35 I was in the best shape of my life, but at 36 I began to experience extreme aches and pains that were only recently diagnosed as rheumatoid arthritis. I have joined the ranks of the Tired Girls. It's a club I'd rather not be a part of, but thank goodness we've got Paula Kamen to speak for us.

She does a great job of articulating what it's like to live with chronic pain. In just about every chapter I found myself nodding with agreement or feeling relief that I am not alone in my struggles and frustrations. I think her book is a must-read for people with "invisible" chronic illnesses and those who love them.

-- Kim Moldofsky

I've lived with chronic headaches for over two years, following a car accident that gave me a concussion. I definitely identify with the author and the interviewer -- when you live with this every day, you will do anything to stop the pain. It takes over every aspect of your life, and when you try to explain that to people, they look at you like you are the biggest baby in the world for complaining about a headache. This is such an important book, and I hope that it starts a dialogue in this country about the effects of chronic pain and chronic headaches in particular.

-- Stephanie Fuqua

Andrew O'Hehir and Paula Kamen remark upon the connection between headaches and depressive disorders. What about the connection between somatic disorders and obsessive-compulsive disease (OCD)? In "Phantom Illness," Dr. Arthur Barsky writes that individuals who have OCD may obsess over the aches and pains that every healthy person experiences, magnify them, and become convinced that they are indicative of a serious health problem. So it isn't as though the pain isn't real. Rather, a person with OCD will obsess over the minor ache to the point where it becomes a debilitating preoccupation. These individuals often find relief in psychotropic drugs, Prozac in particular.

I noticed the absence of the term "hypochondria" in this article, perhaps because of its negative connotations. Doctors are also hesitant to use the term. Instead, they order expensive tests to guard themselves against liability. In my opinion, as long as people are afraid to use the word "hypochondria," the stigma will continue, and people who could benefit from treatment will continue to be tormented by their thoughts.

-- Laura Roos

The article "Head Case" asserts that biological treatment of headaches, especially in women, is new. This is flat out wrong. Ask the women who were lobotomized (yes, lobotomized) in the '40s and '50s for "intractable pain." These were women with no history of mental illness at all. Obviously, since the same operation was used to treat mental illness, there was long ago a supposed connection made between psychiatric problems and pain, including headaches.

It annoys me a great deal to see articles that talk about these treatments and ideas as if they were new. They are as old as the hills and as ineffective as ever -- as Kamen's total lack of relief proves.

Freud, with all his supposed sins against women, at least knew bogus cures like hydrotherapy when he saw them. People today will apparently believe anything. Fig leaf tea in the eye indeed.

-- Christine Johnson

Like Paula Kamen, I have suffered severe migraines over the last 20 years, and my son developed chronic migraines when he was in high school. The reaction from the high-school staff was incredible. His first counselor, looking at his high number of absences, told him to "just get well." Then he was shuttled off to an off-campus program for kids who were dropout risks -- and he had been an honors student.

I worked like the devil to get him reclassified as disabled, but you would not believe the resistance I encountered. Thinking only people with visible problems qualified, people could not see how someone with severe migraines might be disabled. To them I answered: "If you can't get out of bed because you are in excruciating pain, you're disabled." Finally, after three years, I got him classified as disabled and back into regular classes. Immediately he showed up on the honor roll.

The hits we took from everyone from family to friends, all calling it psychological and imaginary, were mind-boggling. Now, my son's headaches are gone and he's a college freshman. Like many juvenile migraine sufferers, he simply grew out of them. All the drugs he had to take probably did no good at all. Me? Botox works. Not a perfect solution, but one I can live with. I intend to go out and buy Kamen's book as soon as I can, because it sounds as if she's someone who can understand what people with invisible disabilities suffer.

-- Lynn Voedisch

I have had chronic headaches since I was in my early 40s. I have also had lower back pain, general fatigue and the whole retinue that is described by the author. I have more than once picked up a book that promised to give me an explanation and a way to deal with my pain only to be disappointed. Through all of this, I have been told that I should not accept the diagnoses that indicate that I am depressed or have chronic fatigue or fibromyalgia -- all of which, I'm told, are grab-bag solutions that doctors use when they don't have the answers.

I am thrilled to find a book about someone who has been there and done that but doesn't whine and say it's a conspiracy. I will buy this book and read it if only just to find a kindred soul who hasn't let the whole thing make her give up.

I try not to let the pain stop me. I find that my biggest problem is learning how to treat myself as not flawed or sick, but limited. I exercise hard every day, I try to eat right (that's hard because theories vary as to what "right" is), am active in performing groups, babysit for a 3-year-old, travel -- and am still surprised when someone asks me, "Are you in pain now?" and I answer, "Yes."

It is usually my female friends who seem to lack understanding for my experience. It's as if all women believe that they have to deny pain in themselves and in their friends. If you do mention pain then you have violated the oath of silence or defamed your sex by playing the pain card. You can't imagine how many of my friends go through unpleasant pain and sadness but refuse to believe that they, or anyone else, should do something about it. It makes me wonder how many women feel pain similar to mine but are just better at soldiering on.

-- Judy Brooks

I have been one of the "Tired Girls" since I was in grade school. I had a headache like Ms. Kamen's through junior high and high school. By my 20s I had several psychiatric diagnoses, endocrine problems, cognitive dysfunction and diagnoses of CFS and fibromyalgia. I was and am completely disabled. I finally got the correct diagnosis, the underlying cause of all my symptoms, a few years ago. It's borreliosis, more commonly known as Lyme disease. Rebecca Wells, who you mention in your article, also suffers from Lyme disease.

I never knew you could have Lyme without a bull's-eye rash or swollen knees, and because I didn't have those two symptoms I never even considered that I might have Lyme. I've since found out there are a legion of Tired Girls -- and Boys -- and many of us are being diagnosed with bipolar disease, panic attacks, chronic fatigue syndrome, rheumatoid arthritis, lupus, multiple sclerosis, ALS and a surprising number of other psychiatric, rheumatic and neurological conditions before we are properly diagnosed with borreliosis. It's not uncommon for a Lyme patient to have three or four of the above diagnoses.

The correct diagnosis hasn't helped me much. I'm in my mid-30s now, and I have been ill for so long I am not even responding to aggressive antibiotic treatment. Borreliosis responds best when caught early. But I have learned a great deal of soul-sickening information about the way the CDC and the NIH and state health departments have mishandled and ignored and denied the borreliosis pandemic. For over a decade now doctors who take Lyme seriously have been persecuted -- yes, I said persecuted -- for "overtreating" Lyme, that is to say treating Lyme as anything more than an easy infection that can be handled with a week's worth of antibiotics.

I have never seen anything in the medical world like this -- there is an entire underground railroad of doctors who won't go public with the fact that they treat patients with severe and chronic Lyme borreliosis. Patients on Lyme message boards warn newcomers never to reveal the name of their doctor in public without the doctor's permission, for fear the doctor's license may be challenged by state medical boards. (Doctors in N.Y. state and elsewhere have lost their licenses for treating Lyme.)

I can't fit the entire history of the politicization of Lyme disease into one short letter to the editor. All I can do is beg the reporters at Salon to do some investigating into this issue. "Tired Girls," or as I prefer to call us, "Brutally Exhausted, Brain-fogged and in Terrible Pain Girls and Boys," are the symptoms of a pandemic the medical system is refusing to recognize.

-- J.

[Read "Growing Up Too Fat," by Katharine Mieszkowski.]

What I observe about the world is not the same as what I read in your article on childhood obesity. While the author claims that today's parents are capable of dealing with their children's eating habits, I have observed two phenomena that make me question her theory.

The first is the "Can I have a bite syndrome." I frequently observe mothers and children in restaurants. The mother dutifully orders a salad and diet coke for herself while allowing her children to order burgers, fries and milkshakes. Mom picks at her salad for a while, then asks the kids for a bite of their burger, a sip of their shake and a few fries. Or maybe she doesn't -- she just eyes their food covetously. I can't shake the feeling that Moms who are restricting their own eating habits are projecting their cravings onto their children, to the children's detriment.

The second is the "kids need energy to play syndrome." When I was a child (long ago in a galaxy far away) my after-school snack consisted of two graham crackers and a glass of milk, or an orange and a pared, sliced apple -- and I still managed to play outside till dark.

I'm not faulting parents. These are trying times, and anything that makes life easier is important. But I don't see any mystery behind what's going on.

-- Peggy Carey

Rising obesity is a real problem. That said, Mr. Campos might be right about the anti-obesity movement while being wrong about the non-threat (from his perspective) of obesity itself. If he is, how can we reverse the obesigenic design of current society without persecuting the fattened people who have been engineered into their current health situation? Especially, how can we limit the cultural/political influence of the predatory profit-chasing diet industry?

Schools need more tax money so they can expel corporate junk-drug food pushers from their buildings. "Junk-drug"? Yes, junk-drug. Research indicates that calorie-dense food, and especially fat, simple starches, and high-fructose corn syrup (in sweet drinks, soft drinks, etc.) stimulate the same dopamine-production centers in the brain that heroin/cocaine/nicotine stimulate. The dopamine-addicted brain seeks out the inputs that stimulated that burst of dopamine production. The dopamine-seeking brain drives its owner to seek out the junk-drug fast-food inputs that stimulated the dopamine pulse within the helpless owner's addicted brain. And the corporate junk hustlers seem to have known that, when they designed their drug-food products to begin with. So McDumbell's, Burger Czar, and the rest may need a dose of the medicine the Tobacco Industry has been getting.

-- Joshua Banner

"The reason that I'm concerned about your weight, and your doctor is concerned, is that we want you to be healthy, and we want you to have a long life. There's a problem with weighing too much."

That's from your article "Growing Up Too Fat" -- just another of what seems to be a million articles from liberal news sources about the "obesity epidemic."

I want to ask why we can't say to a child -- or to anybody who is obese that we're "concerned" about -- that we're concerned about their eating habits and their exercise levels rather than their fat. I think that if there really is any kind of epidemic going on, it's about not moving enough and eating too much. It is not about carrying around too much weight -- diabetes and heart disease have nothing to do with simple mass and everything to do with eating poorly and not exercising.

I believe that by targeting the fat, we are targeting a symptom and using it as a proxy for a slew of bad habits, and that we're also really messing with people's views on how they eat. Our eating habits should not be developed with our weight in mind, but with whether we're getting the proper amount of nutrients and energy. If we eat thinking about our weight, we end up solely concerned about calories, and that's really not the most important thing about how we eat. You can eat two bags of corn chips a day and get the right amount of calories -- or less -- and still get very, very sick.

I also believe that this sort of thinking does damage to a child's self-esteem. No matter how carefully you couch it, a child is going to hear "you're fat, and it's wrong to be fat, therefore something is wrong with you." It is much, much easier to hear "your habits are kind of bad." We'd tell a kid to brush his teeth and not pick his nose. We wouldn't tell a kid "your teeth are rotten and that's gross." Even if we never say "being fat is disgusting" to a child, they're going to pick it up from just about everywhere else.

-- Shelly

I don't question that the greater incidence of obesity among children and adults is related to diet and activity level -- and perhaps it's even true that the "threat" of eating disorders is overblown as Okie suggests -- but telling parents to emphasize to kids that their fat is a strictly a "health issue" and not a "beauty issue" is naive and simplistic.

I don't think you can so easily brush away the deep and deepening stigmatization of body size based on looks, prejudice and classism -- based, in other words, on everything but legitimate health concerns. I don't think you can effectively encourage healthy behavior without acknowledging the connection between self-esteem and one's ability to follow through on the kind of lifelong changes to diet and exercise that Okie recommends. For example, I don't think it does much long-term good to promote more exercise while ignoring the harassment fat kids (and adults) can experience when they try to be active in public. Perhaps it's true that only a relative few ever develop an eating disorder, but I do think that a kid who learns to feel good about him or herself, regardless of size, will be less likely to be drawn back to the short-term comforts of overeating. Along with talking about better eating and better exercise habits, I think we ought to be talking about diversity in healthy body size and shape.

I hope Salon readers will read Paul Campos' "The Obestiy Myth" for themselves. Mieszkowski sets up Okie to spike Campos into the dust based only on one of Campos' more abstract points. Okie emphasizes that the notion that obesity is making people sick is "hard fact." What Campos helpfully emphasizes is that it's also a simple fact that in all but the most extreme cases it is healthier to be fat and eating right and exercising regularly than it is to be thin and not doing so.

It still makes more sense to emphasize healthy eating and activity levels for all, regardless of size, than to single out fat kids and their "problematic" bodies, "health"-only emphasis or not.

-- Mark Reschke

Certainly childhood (and adult) obesity is a dire problem that demands the attention of the medical community. However, I am deeply disturbed by Dr. Susan Okie's comments regarding eating disorders in female adolescents. She states, "There's been a lot in the press over the years about eating disorders and girls, but it's a fairly rare thing." Where, I ask, was this press during the recent Terri Schiavo case? It is downright despicable that this case served as a three-ring circus for every extremist right-to-lifer in the country, while the media completely ignored the important issue -- which was the fact that this woman entered a vegetative state due to her struggle with bulimia nervosa.

In truth, Dr. Okie has no idea how rare eating disorders are because no reliable statistics are available. Often patients with eating disorders are in denial or too scared to ask for help, and even if they were diagnosed doctors are not obligated to report this diagnosis. The National Association of Anorexia Nervosa and Associated Disorders describes eating disorders as rampant in our society. Salon's recent article cites the number of overweight American children to be 20 percent. It seems to me that both eating disorders and obesity are significant problems affecting people in our society today. Both can lead to dire medical consequences, even death. I think it's incredibly dangerous that vocal physicians such as Dr. Okie are completely dismissing the prevalence of eating disorders in adolescents.

I agree with Dr. Okie that many children in the U.S. are in need of lifestyle changes. However, she has oversimplified the systemic problems we face by completely dismissing the role that body image, low self-esteem, and eating disorders play.

-- Sharlissa Moore

I have a number of problems with declaring that obesity is an emotional, familial or societal pandemic.

One, it's not. It's a fitness and nutrition and healthy living issue. People are not materially different today than a generation ago. We simply eat too much fast food too frequently. It is not, for example, a social distortion to say that you can consume 2,000 calories at the movies with a trough of popcorn and a depth charge of soda. My grandfather often stated that the way to eat is to push away when you want one more mouthful.

Two, if you clinically therapeutize obesity as a "process" then you run the risk of handing it over to HMOs and PPOs, which, as we all know, have an interest in not offering any practical solution.

Put simply, the best way to "treat" obesity is to get people to eat less, less frequently.

-- Stephen Rifkin

By Salon Staff

MORE FROM Salon Staff

Related Topics ------------------------------------------