The patient’s influence on illness
What sets apart those people who recover from serious illness?
In general, they find the illness a challenge and an opportunity for personal growth. They tackle the illness actively, rather than being passive recipients of doctors’ treatments. They go to every source for information, are open-minded about unconventional therapies, and try everything. They feel empowered by the discoveries they make to take control of their illnesses, and indeed, their lives.
There is a movement in medicine away from the conventional paternalistic model wherein impersonal doctors treat passive patients who don’t argue or say what they want, and who are therefore not empowered to tackle the changes they must make to overcome disease.
Visionary physicians like Deepak Chopra and Bernie Siegel are leading this revolution. They understand the potential we have within us for modifying the course of disease if we choose to and are allowed to do so. And of course we can learn much from individuals, such as Ian Gawler, who have themselves recovered from 'terminal' cancer. The messages from all of these people are surprisingly similar.
Illness as a challenge
Serious illness is a challenge. Many patients come to regard it as a gift. From the kernel of the problem may come wonderful insights and answers that transform our lives.
For those of us with MS, cancer, and other serious diseases, it is worth remembering that the illness is part of us. We don’t like to think of tackling illness as a fight. It doesn’t make sense to fight yourself. It’s just that some of the cells of your body are not behaving in the way you want them to behave. We have extraordinary power over how our bodies’ cells behave.
If we get anxious and our blood pressure rises, we lower our heart rate to compensate. We don’t have to do it consciously; indeed, we can’t do it consciously. If we get too cold, our muscles start shivering to generate heat. If we get infected with a virus, we mobilize our immune system to fight the invader, and almost always win.
Built into the DNA in every cell in our bodies is the blueprint for fixing itself when things go wrong. Countless case reports exist of patients who were 'terminally ill' with cancer who went home and made a complete recovery.
The body has a tremendously effective ability to heal when it is in balance. The difficulty lies in quieting the mind long enough to allow the body to return to this natural state of balance. This is where meditation comes in.
Imagine there is some greater plan for everything in the universe. Imagine things aren’t happening by accident. Imagine there is an intelligent energy running through all things, guiding them. Faith doesn’t necessarily require you to believe this. Faith is about living life as if this were true. Belief isn’t necessary to have faith. Faith and belief form part of a continuum.
Our friend Siegfried Gutbrodt, formerly of the Gawler Foundation, specializes in laughter therapy. Siegfried always tells his audience about the positive effect of laughter on our bodies, about the good chemicals released during laughter. But importantly, he points out that it can be faked. That even if you are not feeling well but make the effort and have a big laugh, the same chemicals are released. It works. Try it yourself if you don’t believe it. It’s amazing how much better you feel after a good laugh, even if you fake it.
That analogy is useful for the concept of faith becoming belief. Faith is a little bit like faking it – living life as if something is true but not necessarily believing it to be true. But if you live that way long enough, you gradually start to believe it, and it gradually starts to work. Part of the trick with faith is to let go, and just trust that things will work out. In the words of Bill Harris, of Centerpoint Technology, “Let whatever’s happening be okay.”
One of the things people say when first diagnosed with a serious illness is that it’s important to be positive. That’s not as easy as it sounds. It’s no simple exercise to focus on the positives. The positives come when you take the illness as a challenge to change your life. If the illness becomes a means to grow, then the positives start to flow from the change that accompanies that growth. You can’t just will yourself to be positive.
It is now emerging that being positive and happy has a profound effect on the immune system. The term psychoneuroimmunology has been coined to reflect the study of the effect of mind and emotions on immune function. Allowing yourself to become depressed by the illness can literally make you sicker.
Fear vs. faith
One of the ways this important energy we need for healing can be wasted is when we are consumed with fear. In many respects, fear is the opposite of faith.
MS is a frightening disease, particularly when first diagnosed. Most of us want to live a long, healthy life. So often we hear people say, “I hope I drop dead with a heart attack” or “I hope I die in my sleep after a healthy life.” The fear of incapacity and a long, drawn-out demise is distressing for most people. Yet that is precisely what comes to mind with a diagnosis of MS: we have visions of wheelchairs, feeding tubes, catheters, and so on.
However, most people, when first diagnosed, are comparatively well. It makes no sense to spend the precious time we have now, when we’re well, worrying about the future. Worse, wasting energy on worrying robs us of the energy we need to heal ourselves. Dr. Ian Hislop captured it perfectly: “The principle is straightforward. You have to replace fear with faith: faith in yourself, your future, and perhaps in something which transcends both.”
Avoiding depression through diet, sunlight and exercise
Hope and positivity are important factors in avoiding depression, but there’s a lot of evidence that physical factors are important as well.
The omega-3 fatty acids have a key role here. It’s becoming clear that a diet rich in omega-3s prevents depression. This is probably also due to a membrane effect on the nerve cells in the brain. Both animal and human research has shown that fish oil supplementation improves learning. But there is also evidence that low eicosapentanoic acid levels correlate with depression. Data from large-population studies show that countries where fish forms a major part of the diet have much lower rates of depression than those where fish is not eaten much. Japan and Taiwan, for example, where fish consumption is the highest in the world, report rates of depression below 1% of the population. West Germany, Canada and New Zealand, where fish consumption is very low, report depression rates of 5% or higher. There is also evidence from small, uncontrolled studies that omega-3 supplements can improve depression.
So a lower likelihood of depression is another benefit of the diet we suggest. This is particularly important for people with MS, because the lifetime risk of becoming depressed after diagnosis is greater than 50%.
As previously discussed, there is also good evidence that regular exercise prevents depression. Given its other health benefits, exercise should form part of the health program of everybody who is able to do it.
Another important factor in preventing depression is getting adequate sunlight, or if that is not possible, supplementing with vitamin D.
Another way of avoiding depression is through counseling. I recommend everyone newly diagnosed with any major illness consider some psychological counseling. We need every bit of our energy to tackle the illness. Trained professionals can see if we are wasting any energy dealing with unnecessary things or tackling things in unproductive ways. It is worth shopping around to find someone who really suits you. An ongoing professional relationship with someone you know you can trust is enormously helpful.
How we view ourselves and the illness
The way we feel about the illness and refer to it has a big bearing on our outcome. This is not a scientifically proven fact; it is our view, based on years of work in the field.
To quote author Carolyn Myss, “Biography becomes biology.” Like many others, she has seen that if people don’t express their grief, they end up radiating grief. They get depressed. If people can’t say what they want, repress their real wants and desires, and feel powerless, then something like cancer may literally start eating them away.
If people see themselves as “suffering” with MS, they probably will end up suffering and get more attacks. A lot of people with advanced MS are suffering. But we hope that people who take a positive, active approach to this illness and make the necessary lifestyle changes will do much better than if they allow it to dominate them.
We don’t talk about “fighting” MS. MS is a manifestation of an imbalance in your body. It is not some outside invader like malaria or a virus. All the cells involved in MS are your cells and part of you. It makes no sense to fight yourself. It’s not about fighting, it’s about healing.
Healing is multi-faceted, and not just physical. It’s becoming clear that being sick spiritually impairs physical healing.
Feeling in control of the illness
There is considerable literature on the positive effects of people having a feeling of control over illness.
Dr. Bernie Siegel’s books are rich with anecdotes about people he has seen, who have transformed themselves and overcome serious illness by being active, positive participants in the process. He describes the survivors of serious illness as people who actively seek out information, look for people to talk to who have overcome such illness, question their doctors about alternatives, and generally become what doctors think of as 'difficult' patients.
This is one of the reasons we are interested in so-called 'complementary' or 'alternative' therapies – even though they’re really just healthy, healing lifestyle choices. These are things people actively do to change the course of an illness, such as dietary changes, exercise, meditation, getting adequate sunlight, and so on. Why should they be called complementary or alternative? How is improving nutrition and actively calming the mind alternative? Surely it’s more 'alternative' to develop a toxic chemical in a laboratory and then inject it into people, knowing that it will cause damage to their bone marrow, hair, gut and sense of well-being.
Fortunately, we are seeing a move in many Western countries back toward more holistic medicine. Our eastern neighbors have known about such therapies for centuries. Deepak Chopra has recently written about his rediscovery of ayurveda, the ancient Indian traditional healing method.
Many mainstream medical scientists are now using good scientific methods to prove the value of these centuries-old traditions.
Investigating how people with MS respond to alternative medicine practitioners versus conventional doctors, researchers have found that although MS patients got significant benefit from drug therapies and medical providers, alternative medicine practitioners were rated significantly higher in listening skills, care and concern, and patient empowerment. The authors concluded that more study should be done on the benefits of emotional support gained from medical and alternative practitioners.
Writing it out
In April 1999, Smyth and co-workers from the Department of Psychiatry at the State University of New York published the results of a simple study in the JAMA. They performed a well-constructed RCT using 112 patients with chronic asthma or rheumatoid arthritis (RA).
Like MS, RA is an auto-immune disease, but the immune system targets the joints rather than the nervous system. Asthma is also a disease mediated by the immune system. The 'treatment' group was asked to write on just one occasion about the most stressful event of their lives. The 'control' group was asked to write about a neutral topic. With this simple intervention – getting people to express feelings that may not have been completely released before – the treated patients got better and the others did not. This should not surprise us, but to a skeptical medical community this scientific proof came as something of a shock. The p values were 0.001, so the result was unlikely to have occurred by chance. Further, the magnitude of the effect was stunning. The RA patients had a 28% reduction in disease severity (this is about the same benefit as derived from interferon and glatiramer in MS), and the asthma patients showed a 19% improvement in lung function. And this effect persisted for four months after the 'treatment.' Effects of this size and duration are difficult to achieve with drug therapies, without producing side-effects. Yet all this was achieved with only 1 session. Imagine if these people had regularly expressed their feelings. JAMA carried a powerful editorial commenting on the article, by David Spiegel, a psychiatrist from Stanford University. Perhaps the most surprising thing about the editorial is that he sounds surprised. Yet there is abundant scientific evidence of the effects the mind and spirit can have on illness. Most of us know these things to be so resonant with truth that they require no proof. But the medical community has become skeptical in these days of miraculous drug therapy. This is despite long-standing evidence that:
- People are more likely to die after than before their birthdays and holidays, for example
- Patients with psoriasis (a chronic skin condition) heal faster when meditation training tapes are played during treatment
- Patients who express their negative feelings or develop a fighting spirit do better in recovery from cancer
Spiegel concludes with an interesting point: “Were the authors to have provided similar outcome evidence about a new drug, it is likely that it would be in widespread use within a short time. Why? We would think we understood the mechanism (whether we did or we did not) and there would be a mediating industry to promote its use. Manufacturers of paper and pencils are not likely to push journaling as a treatment addition for the management of asthma and rheumatoid arthritis.” Bernie Siegel recommends, not only to people with serious disease, but to everyone, that they start keeping a journal or diary.
Meditation is another important daily ritual, and a key part of the overall package.
There are many types of meditation. It is important to choose one that suits you, and this may take a bit of trial and error.
There is a lot of scientific research around the beneficial physical effects and mental benefits of meditation – much of it in the mainstream medical literature. Regular meditators have lower blood pressure, less heart disease, and so on. There are now more than 1,500 papers in the medical literature on the health benefits of meditation.
We have become increasingly convinced that meditation should form a key part of healing from any disease. Our work with Ian and Ruth Gawler at the Gawler Foundation in Victoria has demonstrated the profound benefits of this simple technique. Ian teaches that the body is capable of healing any illness. In order to heal, it needs to be in a state of balance, to allow the natural healing mechanisms to operate. Meditation can help achieve that balance. His book Meditation Pure and Simple is a must for anybody wishing to deepen their meditation. We recommend it strongly.
Other alternatives to meditation may be just as effective. Researchers have shown, for instance, that music therapy reduces anxiety and depression in people with MS.
How illness affects a person is profoundly dependent on his/her reaction to it and emotional state. But we need resources to tackle illness. It is important to get a sense of control over the process. Conventional medicine, with its emphasis on patients being passive recipients of care, serves us poorly in this regard. It is important for patients to be 'difficult,' to be actively involved in their own care management, while committing to a healthy lifestyle that fosters positive change in the body.