Three Things I've Learned About Living Well With RA
Marc Ian Barasch is someone I discovered about ten years ago when I came across his books, The Healing Path, A Soul Approach to illness, and Remarkable Recovery, which he wrote with biochemist Caryle Hirshberg. Mr. Barasch is an author, film and television writer and producer, a magazine editor, and an environmental activist. He wrote the two books I mentioned after he went through thyroid cancer; the first book describing the journey his cancer led him on, which became a spiritual awakening. The second book happened after he healed from cancer and began to wonder why some people beat incredible odds and recover from incurable illnesses.
The books came into my life during a time when I was really suffering and searching for answers. I had lost the ability to work at a job I loved, and was trying to find out if there was anything I could do or learn to help me feel better. At the time I had been struggling for years with a savage flare that at that point I had to finally admit wasn’t a flare, it was my disease worsening. For years I had been diligently trying any treatment I thought may have some benefit to me. I changed my diet numerous times, went paleo, gluten-free, I detoxed, I added supplements, I tried a variety of alternative treatments, all to no avail. I was tired! So I went to bed and read.
Recovery based on personality
When I started to read Remarkable Recovery I began to really pay attention. The book explores ideas like, is there a recovery-prone personality how the will to live affects survival, and what triggers the healing response. These are weighty topics not easily understood but so important for someone living with chronic illness. There were many things that struck me during the reading of this book about how to be healthier, but ten years later, three of them have stuck with me and changed my life for the better.
The importance of a support system
“ We found in our own study of remarkable recovery that other people are powerful medicine.”1
In Remarkable Recovery, Barasch and Hirshberg talk about how important it is to have a support system, but not just any support system. In order for social support to be supportive of health it has to encourage the ability to confide. “ It may be more important to have at least one person…with whom we can share open and honest thoughts and feelings than it is to have a whole network of more superficial relationships.”2 This is good news for me, and I’m assuming many of my RA cohorts. Social time is so fun but can also be extremely exhausting. Taking the pressure off myself when I know that I’m sacrificing my own well-being by attending an event or party I feel I “should” go to has enhanced my health. The book also mentions that your support person or people aren’t necessarily going to be family members. I’m lucky to have a supportive family, but over the years I’ve often chosen to confide in a few good friends around parts of living with my JRA that are especially tough for my family to hear. Until I read this book I wondered whether I was right or wrong in doing this but now I know that a “confiding relationship” is important for my health I remember this when I’m struggling, and go to the person who can be that for me at the time. I also appreciate my husband Todd so much and remember that I can be that person for him as well, which makes me feel better about my ability to give to others.
One's approach to one's healing
“ But the more interviews we conducted, the more we were struck by the sheer force of individual personalities, by how people’s approach to healing had been a reflection of their own unique self-hood.”2
After I read this book I had a personal epiphany: for me being a maverick is the only choice. So much so that I devoted a whole chapter to this topic in my second book. Remarkable Recovery describes just how different every person is in their approach to healing. One thing they did have in common - they found their own way. Some of them were cantankerous jerks, others were calm serene people who meditated for hours a day, but all of them used their unique personalities, strengths and weaknesses to propel them towards healing. After I thought about this awhile, I stopped looking outwardly as much for answers and began to ask myself what I needed instead. I learned a lot that shaped my life in really good ways, because I was doing things that felt right to me, instead of being a “good sport, or “good patient,” going through the motions being compliant with everyone else’s ideas for me. It’s a much more active approach to one’s life: I think that the actions I take on behalf of myself always strengthen me, even if they don’t work, because, as Thomas Jefferson said so famously, if I try 1,000 things that don’t work, I’m closer to finding the thing that does, And when I do find something on my own that helps me it feeds my sense of self-worth and confidence. Just like all the people who were able to heal despite slim odds, I accept my diagnosis but not my prognosis.
“ It requires a certain daring, a willingness to explore many dimensions of wholeness. Only a handful of people who got well did so without coloring outside the lines.”3
“ …they rediscover joy, creativity, a purpose in life, a sense of worth, a reason to be on this planet, a feeling of fulfillment; they transform their lives careers, cities, marriages. We’re probably guilty of precipitating not a few divorces.”4
The book reiterated something I’d heard from Caroline Myss, an author and speaker who explores energy medicine, spirituality and healing. Ms. Myss has said that in order to heal you have to change from the person you were when you got sick. This was such an obvious idea, but one I’d never contemplated. Barasch and Hirshberg explore this idea in a different way; by looking at the stories of thousands of people that had healed themselves from so-called incurable illnesses they discovered another common thread- each of these people transformed their lives in ways they had never thought about prior to getting sick. They quit jobs they hated, shed hurtful relationships, and found new ways of enjoying life. The people with RA and other chronic, painful diseases that I’ve talked to over the years who have done the best with their challenges have changed a lot from who they used to be. They all have found at least one new passion, new friends, and have re-organized their lives to fit in their health care regime. I firmly believe that in order to live well with RA you have to change and grow; this disease forces change and unless you take the reigns whenever you can, you will only change in ways that feel awful.
There is so much to learn when you live with RA, and occasionally you find pearls of wisdom that serve to move you in a healthy direction. Have their been any books or videos that changed your life? Let me know!
Quiz: Which is NOT a common risk factor for osteoporosis?