I’ve not been writing much lately, but that’s because I’ve been busy becoming unstressed. It’s an ongoing project, but suffice it to say, I think it’s working. I have my moments, of course. While driving with three dogs in my car and one spots another dog daring to walk it’s person on a sidewalk nearby, the uproar of barking and screaming and gnashing of teeth as they hurl themselves at the car windows can be a bit upsetting, and I may lose my equanimity for a moment, but like all moments, these pass.
I want to write a bit more about stress in the next few months, as I am taking on a new project–that of teaching mindfulness-based stress reduction to people with cystic fibrosis (and those who love and care for them) via an online portal to accommodate the need to prevent cross-infection. One of the reasons I am so passionate about doing this is that I know firsthand how stressful it is to live with CF, to watch family members and friends die from CF, and what it feels like to be depressed and anxious largely due to the toll CF plays on my psyche. As a start to the stress series I hope to write (unless it becomes too stressful), I’ll repost what I recently wrote in the CF Roundtable:
Stress is not a light-hearted topic, but given the recent findings of the international TIDES study (The International Depression Epidemiological Study), I think it is important that we talk about stress and the common effects of mismanaged stress—namely depression and anxiety.
The TIDES study spanned 154 centers; 6088 patients with CF and 4102 parents. This is a very large sample size, and the statistically significant findings are eye opening. Specifically, there are elevated signs of depression in 10% of adolescents with CF, 19% of adults with CF, 37% of mothers and 31% of fathers (of children with CF).
The consequences of depression are decreased adherence to our very complex medical regimen, disrupted family function, diminished quality of life, difficulty with sleep, impaired appetite, poor energy, and a weakened immune system. If this is not bad enough, I’m sure you can come up with a few more reasons that depression sucks.
The findings regarding anxiety in the CF world are worse. Elevations in anxiety were found in 22% of adolescents, 32% of adults, 48% of mothers and 36% of fathers.
Overall, these findings show the prevalence for both depression and anxiety in the CF community are two to three times greater than community samples. Of course, both depression and anxiety are the result of complex factors including genetics, environmental, psychological and developmental factors. But clearly, at the heart of environmental factors is the stress caused by living with CF. Knowing about the chances of a shortened life span is stressful. Not being able to do the “normal” things your peers do is stressful. Trying to fit into 24 hours all that needs to be done daily to manage your illness is stressful, because life doesn’t stop just because you have to do treatments and occasionally go into the hospital. You still have to deal with “normal” life stress. And of course, knowing that even when you do everything right, the outcome is often out of your control is stressful.
All of these stressful events are “chronic” stressors, as opposed to “acute stress” such as being chased by a hungry tiger. We have evolved to get over acute stressful events (as long as we don’t keep re-living the experience). But chronic stress is a different animal—no pun intended. Chronic stress wears on the body, physically and mentally. It is always there, ready to ruin your day if you let it. Hence the findings of the TIDES study.
So far, this has been quite a bummer of an article, and I’m sorry. But there is good news. There are quite a few things that are very effective for managing chronic stress. I’ve written about some of these before, namely getting daily exercise, proper nutrition and sleep, and finding time to relax and engage in activities and be with the people that you enjoy on a regular basis. There are also very helpful medications when these lifestyle habits are not enough. There is certainly no shame in needing additional medical attention for depression or anxiety.
But in this article, I’d like to focus on a technique that I have found extremely beneficial for handling life with CF with a modicum of balance and even occasional equanimity. Mindfulness meditation has been a practice I’ve used on a fairly regular basis for over 20 years.
I took my first eight-week course in “mindfulness-based stress reduction” when I was in my mid-thirties, very early in my career as a surgical pathologist. For some reason, up until this point I had not had major lung complications from my CF. But with the stress of a new job, a significant commute, and the necessarily busy schedule, my health began to decline. The reality of having a lung disease hit me square in the face, and I was looking for ways to help deal with it.
I saw a sign for the eight-week meditation class at the hospital where I worked, and signed up. This was one of the better moves I’ve made in my life, as I’ve benefitted from that class for the last 20 years. The practice I learned has helped me navigate through illnesses, upsetting sputum culture results, losing friends and another sibling to CF, losing my parents, and generally watching my health slowly decline. I won’t say those things have been easy, but becoming familiar with that place beyond my mind and body that never changes has proven immensely helpful.
That first class also planted a seed in my mind, though. I began to think that if it could work as well as it did for me, that maybe others in the CF community would benefit as well. This seed began to sprout about five years ago, when the opportunity to train as an MBSR teacher landed in my lap. I had a friend who had done the teacher training, and as a result, she and I began to teach a community class in mindfulness, which was a blast. That was when I knew I needed to pursue the idea of bringing MBSR to the CF world.
A brief word about MBSR is in order here. The class is the brainchild of Dr. Jon Kabat-Zinn, a PhD in molecular biology who also happened to be a Buddhist meditation practitioner. He knew the practice of mindfulness would benefit sick people, and in 1979, began to ask his colleagues at the University of Massachusetts Medical Center to send him their toughest cases, the people for whom they had no answers. People with debilitating chronic pain, untreatable cancer, horrible anxiety, or terminal diagnoses soon began showing up at his door. Of course, he knew he couldn’t begin to preach Buddhist theory…this was a hospital, after all. Somehow, he had to secularize what he did every day. He needed to create Buddhist meditation without Buddhism.
So Kabat-Zinn came up with an eight-week program where patients met as a group once a week to learn several different meditation techniques as well as practice gentle yoga. They also talked about ways of coping with reactive states of mind, and learned how to practice being mindful in everyday life. They were given homework of daily meditation, using guided meditation tapes provided by Kabat-Zinn.
An amazing thing happened. Terminal illnesses weren’t cured, of course, but people learned how to cope and enjoy what time they had left. Some people had pain reduction, but almost all improved the ability to tolerate their pain. Depression and anxiety lessened. Ever the scientist, Jon Kabat-Zinn collected the data and began to publish.
Now there are thousands of published papers on the benefits of mindfulness. MBSR programs are offered in hundreds of hospitals and community centers internationally. The science is fascinating. It appears that just an eight week intervention including meditation and gentle mindful movement at home, combined with the weekly group practice actually physically changes the structure of the brain. Areas of the brain associated with the control of empathy, emotions and compassion grow, while areas involved in anxiety and stress shrink. And these changes correlate with what patients report in numerous psychological tests.
Research, then, supports what I have discovered directly: Mindfulness meditation can benefit those of us with cystic fibrosis by changing our brains in ways that foster emotional balance and self-compassion while reducing the ever-prevalent problems of depression and anxiety.
It is possible to learn to meditate without taking a class, of course. There are fabulous books. There are online guided meditations. But every time I take an MBSR class (I’ve taken six now), I am amazed at how much being in a group helps, not just with accountability but because of how the group dynamics work. People share their struggles. We all learn that we are not the only ones suffering with…well, just about anything. Starting a habit like meditation can be hard. It may feel very awkward and discomforting at first. You will fight sleepiness. You will doubt that it is working. You will wonder if you are doing it “right.” You will want to give up and go get coffee. Your mind will wander off a thousand times. But, when you are in a group of people who ALL describe these same struggles, it is easier to stay on track.
With the amazing help of CFRI and the support of Vertex pharmaceuticals, I am beginning the inaugural online MBSR for CF (and caregivers) this spring. I hope you will join me. You can find out more, and sign up for the course at http://www.cfri.org/mbsr.shtml.
If you sign up (and Vertex has taken the financial burden of doing so down significantly) I can promise that you will learn a lot about what your mind does that is less than skillful, and this will prompt more healthy coping with life’s difficulties. It is worth the investment. You are worth the investment.
A recent study by Cruz et al, “Anxiety and Depression in Cystic Fibrosis,” (Semin Respir Crit Care Med 2009; 30: 569-578) came across my desk the other day. Oddly, I was in the middle of creating a talk about exercise and was on the exact slide where I talk about my favorite book on the subject of exercise, Spark, by Dr. John Ratey.
Ratey is a psychiatrist at Harvard and one of his areas of expertise is the neurochemistry of exercise. I read this book when it first came out and have practically forced most of my clients and several family members to do the same.
The Cruz study points out in grave detail the increased prevalence of both anxiety and depression in people with cystic fibrosis, noting that these have important consequences, including poorer disease outcomes and lower scores on measures of quality of life. Depression especially wreaks havoc on adherence. It makes sense, really. When you are depressed, it is very easy to blow off treatments. When you don’t care, why bother? When you are consumed with anxiety, a trip to the gym is not the first thing you think about doing.
After these grave facts are discussed, the authors conclude that better screening for depression and anxiety should be done on patients with CF, and treatment given to those with symptoms, including medication or therapy (or both). I would add one more tool to the bag, one that in fact would also likely work as a preventative measure. And…it’s free (a big plus these days).
If Ratey is to be believed (and he gives sound reasoning and research to back up his material), the BEST time to head to the gym or lace up your walking shoes is when you are blue and don’t feel like doing anything. The reason is that exercise acts as an antidepressant. In fact, exercise is nature’s perfect antidepressant…with no side effects. The reasons are complex, but I am going to try to simplify:
First and foremost, to call “depression” a disease is like calling a “cough” a disease. A cough is a symptom that something is wrong. Perhaps you have asthma. Maybe you are choking on a marble. It could be that the air is extremely polluted and all sentient beings are suffocating. The bottom line is the cough tells you that something is wrong. The underlying cause is yet to be named.
In the same way, depression is a symptom. Many things can cause depression: pain, stress, medications, trauma, addiction, AND altered neurochemistry, to name a few. Just looking at the last one, the brain’s chemistry can be messed up in completely different pathways and yet the final result can look similar. This is why a medication that blocks the re-uptake of serotonin may work on me, but not you. Someone else may only respond to a medication that increases Dopamine…or Norepinephrine. The names are not important. What is important is to understand that the whole thing is very complex.
And yet, one thing that we all can do at some level, exercise, seems to be able to jolt the brain back into balance. It seems to regulate the neurotransmitters that antidepressants target….all of them…and at just the right dose.
Almost immediately when starting to exercise vigorously, norepinephrine is elevated. This is the wake up and get going chemical that also works mysteriously on boosting self-esteem. Also, dopamine, the brain’s attention system and regulator of feelings of well being, is elevated. Finally, the well-known chemical serotonin, important for mood, self-esteem and impulse control, bumps up. And to add frosting to this cake, endorphins are made within the brain upon exercise, and we all know what endorphins do…
So that’s the chemical story. But there is an architectural one as well. Exercise causes release of something called BDNF (brain-derived neurotropic factor), which Ratey calls “Miracle-Gro for the brain.” This, and other neurotropins cause the brain to a) make new cells, and 2) create and foster new connections between brain cells. As he explains, depression is caused not just by a lack of neurotransmitters, but also by a lack of connections within the brain itself. BDNF fixes this. Exercise releases BDNF.
Yes we are at high risk for depression. And yes, depression is very bad for compliance with a complicated medical regimen. Sure, we could take another pill or two or three (and some of us may need to) to combat depression. But one easy thing to try right now is to move. Every day.