A Journalist-Turned-Patient Writes the Book on Chronic Pain

Judy ForemanJudy Foreman is a nationally syndicated medical journalist with 40 years of deadline writing under her belt. She was a staff writer at The Boston Globe for 23 years, from 1978 through 2000, and a medical specialist and science writer since 1985, covering all sorts of health issues – fitness, aging, cancer, heart disease, pain, nutrition, and basic biological sciences. As a person suffering from chronic pain herself, she became deeply interested in the problem of chronic pain in society, and her book on that topic, A Nation in Pain, was published by Oxford University Press in 2014. Foreman spoke recently by phone with Neil Andrews, executive editor of RELIEF, to discuss what it is like to have chronic pain, the reaction to her book, and what needs to be done to raise awareness of chronic pain. Below is an edited transcript of their conversation.

What is your personal experience with chronic pain?

About five or six years ago, I developed horrific neck pain that came on relatively suddenly and became worse fairly fast. It took a long time for me to receive a diagnosis, but it turned out that I had spondylolisthesis, a condition in which the vertebrae slide forward over each other. In my case, the vertebrae didn’t quite compress the spinal cord, but they really affected it—it was essentially an irritated nerve root. My neck was incredibly hypersensitive; I had allodynia, where just touching the back of my neck sent me into tearful pain. The constant nerve stimulation also made the trapezius muscles of my neck go into horrific spasms. I ended up with cervical dystonia, which meant that my head was tipped far to the left, and I couldn’t raise it just using my neck muscles; I had to use my hands to move my head back to where it should be.

At the time I had a weekly call-in radio show, and I wore professional earphones with a microphone attached. They couldn’t have weighed more than eight or ten ounces, but even just that small amount of weight on my head was horrible. I would spend the whole hour trying to make my neck comfortable.

What was it like seeking treatment?

I tried everything: opioids, NSAIDs, Tylenol, acupuncture, massage, and meditation. At one hospital that I went to, I saw a physiatrist. My pain kept getting worse, and the more I didn’t improve, the more impatient and angry the physiatrist became. She asked me one day if anything emotional was going on in my life, and I have never been as angry at anybody as I was at her. Her not believing me was adding insult to injury—literally. Unfortunately, this is a very common experience for pain patients.

I finally went to New England Baptist Hospital in Boston, where I went through a “boot camp” at the spine center there. This is a program where you are put through incredibly intensive physical therapy and exercise, including exercise you think would be the exact wrong thing to do, like picking up a crate of bricks the wrong way. But my pain actually improved. Chronic pain involves a central sensitization of the nervous system—it’s a revving up of the nervous system so that there is pain even in the absence of the original painful stimulus—and becomes a disease in its own right that is self-perpetuating. The exercise seemed to reverse that process, and it really did work. It took months, and while I still notice my pain sometimes, I’m better, by and large—and I haven’t taken opioids for years.

When I went to New England Baptist Hospital, the people there believed me—there was just no question about it. A neurologist I saw there put a pillow in my lap so I could rest my arms when I was sitting on a chair in his office; this way I didn’t have to use my shoulders to keep my arms up. It was just a thoughtful little gesture, and it helped.

How did the book come about?

I had a weekly column that I wrote for the Boston Globe, and I decided to write not only about my pain, but how I felt denigrated by large parts of the medical system. The column received a huge response, including from a very nice ear, nose, and throat surgeon from Massachusetts Eye and Ear in Boston who himself had experienced horrible pain and had become suicidal. He said that, as a doctor, he had been taught to be skeptical of people’s pain, and to err on the side of less medication. After he became a pain patient, his takeaway was to believe the patient. That had such a big effect on me—here was a doctor who went through what I went through. I thought there was probably a book in all of this, and so I wrote a proposal, which was accepted by Oxford University Press.

What were the most surprising things that you learned about chronic pain while you were researching and writing the book?

There were several things. For example, I visited Jeff Mogil at McGill University in Montreal, from whom I learned that most basic pain research is done on male animals, even though women are more likely to have chronic pain than men. I went to a special interest group (SIG) meeting that he and other researchers attended, and the resistance to including female animals in research was surprising. The SIG members advocated for inclusion of female animals, but many of their colleagues just didn’t see any point in it, nor did many research funders. That was really galling, but, fortunately, that is changing.

Another thing I saw was incredible hostility between the pain community and the addiction community—they are totally at odds—and how the addiction community completely has the upper hand in terms of public awareness of the opioid issue. As a journalist, the most upsetting thing for me is that the press has focused entirely on the addiction problem, which is real, but it’s only half the story. The other half is the lack of access to the drugs that pain patients need. People with addiction, which is a real disease and desperately needs to be taken care of, are a different population than pain patients, who tend to be older. There is research suggesting that abusers, not pain patients, are the ones who are taking the drugs non-medically; pain patients by and large don’t have the overdose or addiction risk that abusers do. But the press has not done a good job of teasing this apart.

How did the addiction community get the upper hand in the debate over opioids?

It’s the low-hanging fruit—it’s the easy story. You see a police report of another overdose case, you call the family and they’re very upset, understandably. But the pain patients are suffering quietly at home; they can’t get off the couch and they don’t think about calling the newspaper. The crackdown on opioids can end up punishing people with pain—the wrong people.

How has the book been received?

With gratitude: people are very thankful that it’s fair and balanced. But I’ve also become a target, although not as much as others, thank goodness, by people who are against opioids. Although, one interesting thing is that because the opioid issue has received so much publicity, I have found myself on various talk shows as the token person taking the other side of the debate. In a way that’s been good for the book.

Still, it’s very hard to make a dent, because people don’t see chronic pain in the way that they view the addiction issue.

What other reactions to the book have you seen?

Many people don’t believe the pain numbers: the Institute of Medicine report found that 100 million Americans have chronic pain. Not all of those people have severe, disabling pain, but maybe 10-30% fit that category. Chronic pain is so invisible as an issue that people who have it are joyful that my book is out there. People who haven’t had chronic pain can’t quite believe the problem is so serious and extensive. Frankly, I wouldn’t have believed it either if I hadn’t had chronic pain myself. Prior to my own experience, I thought that people who complained about pain were just depressed or anxious or just not strong enough. When I experienced it myself, it became clear to me that pain has a physical basis—it is real and intense. But it’s so hard to convey that with words, and so it is extremely hard for people who haven’t experienced that kind of pain to really believe it.

Are we at least moving in the right direction on the issue of chronic pain?

Mostly no, unfortunately—and that makes the book a hard sell, and it makes the next book I’m working on a hard sell too. It is really discouraging. The addiction community has sucked all the air out of the room, and Congress is so dysfunctional that I’m not optimistic that pain research will get the funding it needs and deserves. We need an institute on pain at NIH [U.S. National Institutes of Health], because to the extent that there is funding, it’s still only less than 1% of the NIH budget. The funding level is completely out of tune with the severity and the prevalence of the problem. Chronic pain research really needs to have a home in the government.

One small ray of hope comes from the military, which is very pragmatic—if something works, they’ll go with it. With so many veterans returning from Iraq and Afghanistan with horrendous limb loss and pain, the military is quite open to nonpharmacological approaches, such as acupuncture. They’re also very aware of the opioid problem and are trying to help veterans use non-drug treatments to help with their pain.

Another area that is very hopeful is research on brain imaging, which shows clear differences between the brains of people in pain and those not in pain. Brain imaging is a really positive thing; by documenting the problem, it’s probably the way out for people whose pain is not believed by others.

Do you agree with the sentiment that real change is going to require a grassroots effort from patients?

Yes—that is my take-home message. We cannot leave it up to scientists or doctors or Congress. The government spends only four dollars for every pain patient, compared to more than $2,500 for every AIDS patient. That’s because patients with AIDS have been great lobbyists for their own cause, as have patients with breast cancer, and people with disabilities. The squeaky wheel gets the money, and that’s why, ultimately, it has to be up to pain patients to lobby for more research. It’s yet one more burden on the patient, but that was true for people with AIDS and breast cancer and disabilities as well. Ultimately, the only hope is patient activism—for patients to really make noise—and that’s possible because we’ve seen it work in other cases.

You mentioned earlier that you’re working on another book. What is it about?

The focus of the new book is also on pain, but with a global focus. In particular, it is looking at the lack of morphine availability around the world—it is really appalling. Each year, tens of millions of people around the world are dying in a lot of pain because access to opioids is so restricted. For example, across the globe, especially in the developing world, cancer is diagnosed so late in the disease that palliation is the only option, but the drugs for pain and palliation just aren’t available, even though they are cheap.

The anecdotes and the statistics are horrendous. The story of a little boy in India who had a genetic muscular disease that was terribly painful really sticks out in my mind. The hospitals there don’t have morphine, and so his parents killed him to put him out of his pain, and then they killed themselves. The stories are just heartbreaking; it’s hard just to tell them because they are so awful.

The World Health Organization says that tens of millions of people around the world suffer in pain because of lack of access to controlled medicines. This includes not only one million people dying of AIDS, but also five-and-a-half million people dying of cancer, another million people who have had accidents or have been the victims of violence, as well as people with chronic illnesses, and people suffering from pain after surgery. Women in labor and children are affected by this too. All of these people are not getting the morphine that should be made available to them.

Is there anything else you would like to add?

Whether you are a doctor or a family member or a friend, if you know people who are talking about their pain, believe them.