Two – learning to live with pain that will not easily abate or go away is possible.
Tens if not hundreds of thousands of people have discovered that living with pain is a process. A minuet of sorts, maybe not to the tune you would have chosen if you were entirely in charge of how things unfolded in your life, but nevertheless workable in some wonderful and very freeing ways, especially if you are willing to do a certain amount of work yourself.”
Early on in my career as an RA Superhero, one of the most regularly repeated pieces of advice that I often used to hear was “learn to get used to the pain.” I used to take these words to heart, but only partially. I mean, I was young…much younger than some of the people that I was speaking with. Certainly, many of the new advances in medical science would prevent me from having to experience such a life of chronic pain and disability. I only had to find the solution, that perfect mix of prescription medication, and my life would be different.
At that time, I was open to learning about how I could get used to the pain…but only under one important condition: my pain had to go away soon. It definitely could not last forever!
“Our usual options when faced with situations we don’t like and wouldn’t want anyone to suffer from are twofold. As we just saw, we can turn away from them and try to ignore them or escape from them as best we can. Or alternatively, we can get caught up in obsessing about our troubles endlessly and feel victimized.
Either way we might, as so many people do, turn to familiar resources at our disposal to dull the pain, such as alcohol or drugs or food or TV, even if those coping strategies don’t work, are addictive, or have terrible consequences that may make our lives worse in the long run. We might also get into the habit of being irritable, gruff, and angry a good deal of the time, out of our own pain and frustration. Or emotionally withdrawn from other and from life, distant, cut off, in a state of perpetual contraction of both body and mind.
None of these coping strategies make for much happiness and ease of being. Grinning and bearing it isn’t much fun. And blaming all our troubles on the pain doesn’t actually make anything any better, as we usually come to see at some point or other. This can just further compound our frustration and even despair.”
Sometimes, I wish that I could return to that period of time, when I used to really hope and believe that the pain would one day go away. But looking back, I now realize that maintaining these thoughts for such a long time actually did me more harm than good. That’s why, since this past January, one of my most important personal goals has been the following: stop turning away from the pain, and figure out instead how to turn towards the pain. Allow myself the opportunity to see what I might be able to learn from the pain.
“We will be learning from life, and one of the things we will be learning and experimenting with is that even the pain itself–perhaps what we sometimes feel is our worst enemy–can eventually become our teacher, and ultimately our ally and friend, if we can learn to listen deeply to it.”
Over the past few weeks, I’ve been listening on a regular basis to Mindfulness Meditation for Pain Relief: Guided Practices for Reclaiming Your Body and Your Life by Jon Kabat-Zinn. Over the past few years I’ve read and listened to many other books by this same author, who is one of the leading individuals in the study and practice of mindfulness based stress reduction. I’ve enjoyed and been helped by all of these books, but if I were ever told that I could keep only one of his books, I would definitely stick with the one that I mention above.
Even though my disease activity was quite low during the past two weeks, I continued to listen to the mindfulness meditations from this audio book. A couple of days ago, I caught myself actually thinking that I couldn’t wait until my next flare, so that I could practice much of what I was learning. Was I actually looking forward to a flare, I shockingly asked myself. No, that might be pushing things too far. But I was, in fact, looking forward to the next opportunity to apply what I had been learning (which would probably correspond to my next flare.) For the first time in my life, I felt more ready than ever for the inevitable upcoming flare. I felt prepared.
I was ready.
“There is a third way of dealing with painful experiences, a way of being rather than of perpetual doing and forcing. One that involves neither turning away from painful experiences nor becoming overwhelmed by them. That third way is the way of mindfulness, the way of opening to and befriending our experience, however strange that may sound. We do this by turning toward what we most fear to feel, and opening gradually, over time and only to the degree that you choose, to the full range of our experiences in any given moment, even when what we are experiencing is highly unpleasant, aversive, and unwanted.
You could think of it as putting out the welcome mat for what is happening, because whatever it is, it is happening already. Any attempt to turn away is really a denying of your situation, which doesn’t help much, and succumbing to resignation, a sense of being defeated or to depression or perhaps even self-pity, will clearly only make matter worse. If we take the turning away route, we will be turning away from the opportunity to learn from what the pain has to teach us. If we taking the turning away route, even though it may seem simpler when we are in a depressed mind state, we may never find openings, new possibilities, new beginnings, new ways of being that are available to us, right inside our own circumstances and our own mind and body. We might not discover that we can become stronger and more flexible in the face of whatever it is we are dealing with. Discover new options for relating to what we are carrying, which is the root meaning in Latin of the word to suffer.
The approach of mindfulness, of turning toward and opening to our experience, even when it is difficult, can readily lead to new ways of seeing, including new possibilities for coming to terms with our situation in the moment, whether we like it or not, whether we want it or not. This is called resilience, an interior strength that we can cultivate through practice. A way to live, and live well, with what life offers up for us.”
I got the opportunity to put my new found skills to work sooner, rather than later, as I entered into a severe flare late yesterday afternoon. For the first time ever, I looked at my pain right in the face. I wasn’t being challenging; my approach was more inspective, with a dash of curiousity. I took the opportunity to see, feel, and experience things that I had not been able do so before. (Usually, in previous flares, my thoughts were occupied with images of fear, anxiety and escape.) I paid attention to the moment; instead of telling myself that I was going to be okay, I told myself that I was okay. Before I knew it, I sensed a ‘snap’. I recognized the exact second when my flare started to break. It was a completely new feeling for me, and it felt wonderful. I let my flare come, I experienced my flare without judgment, and I let my flare pass.
“We’re not trying to force anything to be other than it is, only hold it in awareness. Out of that, the pain and our relationship to it can change profoundly.”
Up until a few months ago, the thought of turning towards my pain was one of the scariest things I could imagine…so much so, that the mere thought would immediately trigger anxiety attack. When I made the decision at the beginning of this year to stop turning away from my pain—to stop hoping that it would just all go away tomorrow—it was still a little scary…but it felt like the right thing to do. I’ve been on this new path for some months now, and I don’t exactly know where it’s going to take me in the end, but a couple of things are already clear: I did made the right choice, and I am on the right path.
My relationship with my pain is changing. It’s changing for the better…and I couldn’t be happier, even despite the fact that my pain hasn’t gotten any better, and it certainly hasn’t gone away. It’s here to stay, and I’m accepting it into my life. I’m getting to know it as I’ve never done before. I’m finally allowing myself to listen to my pain, and—most importantly—to learn from it.
All of the above quotes were taken from the following audio book:
Mindfulness Meditation for Pain Relief: Guided Practices for Reclaiming Your Body and Your Life
Mindfulness can transform pain. Over the past three decades, Jon Kabat-Zinn has clinically proven it. Now, with Mindfulness Meditation for Pain Relief, the man who brought mindfulness into mainstream medicine presents for the first time on audio his original practices for using conscious awareness to free us from physical and emotional suffering. This long-awaited two-CD program begins with an overview of how mindfulness changes the way our bodies process pain and stress. Listeners will learn tips and techniques for working with the mind and embracing whatever arises in our lives, however challenging. Then Jon Kabat-Zinn leads us in guided meditations drawn from his pioneering Mindfulness-Based Stress Reduction (MBSR) methodology to help us work with and find relief from chronic pain, everyday stress, and emotional challenges, as well as to read and act appropriately in the face of acute pain. “Mindfulness can reveal what is deepest and best in ourselves and bring it to life in very practical and imaginative ways–just when we need it the most,” explains Jon Kabat-Zinn. Mindfulness Meditation for Pain Relief gives us a ready tool for overcoming even the most extraordinary difficulties.
In an email that I received the other day, a reader asked me if I ever feel like a burden to those people who are around me. When I stopped to ask myself this question, my answer was an immediate “no”. It’s sort of funny in a way, though, because the last few times that I asked myself this question, my answer was the complete opposite.
After all, there is so much that we require when we live with chronic illness. One of the heaviest tolls this takes in on the checkbook; I barely need describe all of the money that is constantly being spent on medicines, treatment, physical therapy, labs, and so on. Combine this with this fact that I myself am able to work just a fraction of what I used to, and the financial equation is being squeezed on both ends: income and expenses.
Next comes the fact that there are times when I can do almost nothing except lie awake in bed. I can’t contribute an equal share to the household chores, to running errands, to cooking meals, etc. As my dedicated partner picks up the slack yet once again, even if it is a Saturday (the one day of the week when I try to exert my strongest force possible in order to give him a break), I think it’s easy for feelings of unfairness and resentment to start to grow.
And I could go on and on about how much attention is dedicated to my health and well-being, but suffice it to say that almost all aspects of daily life are in one way or another affected by the presence of chronic illness, especially such a debilitating disease as rheumatoid arthritis. This disorder takes a toll on me each and every day, and I know it does quite a number on those who are close to me. And speaking just for myself, I know how angry, how sad, how hopeless, and how depressed this illness can make me feel at times.
So yes, I used to think of myself and my illness as a burden–not just on myself, but on others as well. But I don’t think so anymore…and it made me think, what sparked this recent change in my thoughts?
Doing What I Can
Yes, I know that I may not always be able to do my 50% of what needs to be done, but I think that I continually show that I’m able to do as much as I can. (And no, I’m not suggesting that one work against those limits, even on days when you’re doing better than usual.) Chores, as annoying and painful as they can much of the time, have become occasions to show myself what I can do. On most evening, I take pleasure going around the house to draw the curtains (which always remind me of one of my favorite childhood books, Amelia Bedelia). I may not be able to scrub the pots, but I can wash the plates and glasses. There are other items, such as planning and organizing, that I am particularly good at, and that can be done while sitting. So I may not be able to do half of the household work, but I able to still do a lot…just in a different way.
Staying in a Good Mood
Okay, I know, there are days when we feel like walking death, and when the flames coming out from our noses are sometimes not even signal enough to give sufficient warning to those around us that we’re in a bad mood. But I’ve learned (and haven’t yet reached complete success, but I think I’m much closer than I used to be) to not take out my pain on other people. Don’t snap, don’t yell. Once again, I’m not advocating that one should hide certain emotions and feelings that do need to come out and be worked through…but we’ve got to make sure to do so in a way that does not harm those around us. They may not feel our pain directly, but they do feel their own certain pain…and I for one need to do whatever is in my ability to not make it any worse for them.
Maintaining Open Communication
Sure, rheumatoid arthritis brings a lot of issues into my personal relationships…but then again, so does everything else in life. Jobs. Relationships. Family. Friends. Politics. I’m going to make an all too obvious point, but one which I don’t think can be stressed enough, which is the importance of talking, and of sharing feeling, with those around me. Sometimes I wake up and just assume that everyone knows I’m in a lot of pain and in a bad mood…but if I stop to think about it, that’s not always the case. Talking helps. And it helps even more when it’s not always done during moments of crisis. During those down times, when the pain is less and I’m able to do more, it’s nice to talk–and plan–about what works best for me and those around me, next time I’m back in a flare.
Not Just Receiving, But Giving Attention
And when it comes to personal relationship, such as the great one that I’ve been in for the past eleven years, I think it’s particularly important to remember that our partners/spouses need their own fair share of attention, for their aches and pain and feelings and moments of joy and periods of sadness. I know firsthand how easy it is to get consumed by the constant needs and demands of my disease…but it’s great to remember to give both myself, and especially those around me, the moments of attention that we all need.
Chronic illness does place a huge burden on the person living directly with the disease, as well as their friends and family…but with the proper attention, and effort, these imbalances can be corrected. The solution may not always match what we’re used to, but there are ways to work things out.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Healthcare giant Johnson & Johnson plans to meet with U.S. regulators after they refused to approve a new use for the company’s immune disorder drug, Simponi.
The company, based in New Brunswick, N.J., said Friday night that the Food and Drug Administration notified its Janssen Biotech Inc. subsidiary that it would not approve marketing of Simponi for limiting progression of structural damage in patients with moderate to severe rheumatoid arthritis.
What advice would you give to someone who has just been diagnosed with RA?
Don’t think that it stops you from doing things you like. There are ways to treat your JRA. Do all the things you like but if it hurts you may want to stop and rest.
Do you use any mobility aids?
Daddy carries me if I hurt.
How has living with RA helped to improve your life?
I don’t give up.
Do you have any visible signs of RA?
I have 2 scars on my right knee from surgery when I was 2 and my knees are bigger then they should be because of the JRA.
Can you please describe some of your favorite coping strategies for living with RA?
I cuddle up with my parents in bed and watch movies. I have a little stuffed dog, Peter, that was given to me as I was coming out of surgery when I was 2 and in the process of being diagnosed. I need Peter and the blanket my mom made me when I’m having a bad day.
Can you please describe your current medical (traditional and alternative) treatments?
Remicade, CellCelt, naproxen, pred drops too when my eyes are flaring and physical therapy.
Is there anything else about yourself that you would like to share?
When I’m sad I always pick myself back up. I try not to keep myself sad about having JRA.