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 andÂ 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. Â 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 stressâ€”namely depression and anxiety. Â
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, Iâ€™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.Â Of course, both depression and anxiety are the result of complex factors including genetics, environmental, psychological and developmental factors.Â But clearly, at the heart of environmental factors is the stress caused by living with CF.Â Knowing about the chances of a shortened life span is stressful. Not being able to do the â€œnormalâ€ 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 doesnâ€™t stop just because you have to do treatments and occasionally go into the hospital. You still have to deal with â€œnormalâ€ 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 â€œchronicâ€ stressors, as opposed to â€œacute stressâ€ such as being chased by a hungry tiger. We have evolved to get over acute stressful events (as long as we donâ€™t keep re-living the experience). But chronic stress is a different animalâ€”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 Iâ€™m sorry. But there is good news. There are quite a few things that are very effective for managing chronic stress.Â Iâ€™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.Â There is certainly no shame in needing additional medical attention for depression or anxiety.
But in this article, Iâ€™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 Iâ€™ve used on a fairly regular basis for over 20 years.
I took my first eight-week course in â€œmindfulness-based stress reductionâ€ 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 Iâ€™ve made in my life, as Iâ€™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 wonâ€™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.Â 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.Â 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 couldnâ€™t begin to preach Buddhist theoryâ€¦this was a hospital, after all.Â Somehow, he had to secularize what he did every day.Â 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.Â They were given homework of daily meditation, using guided meditation tapes provided by Kabat-Zinn.
An amazing thing happened. Terminal illnesses werenâ€™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.Â 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. Â
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. Â ItÂ 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 â€œright.â€ You will want to give up and go get coffee. Your mind will wander off a thousand times. Â 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. Â I hope you will join me. You can find out more, and sign up for the course atÂ 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 lifeâ€™s difficulties. It is worth the investment. You are worth the investment.