Determined To Heal

“Take me home from the Oscars” – A book review and analysis

16 Jul 2011 Leave a Comment

by Erica in Book reviews, Chronic illness, Chronic pain, Compassion, Coping, Disabilities, Inflammatory bowel disease, Rheumatoid arthritis, Social support Tags: Christine Schwab, Coping with chronic disease, rheumatoid arthritis, Take me home from the oscars

Summary:

In the memoir “Take me home from the Oscars: Arthritis, television, fashion and me” Christine Schwab wrote about the trials and tribulations that she endured with rheumatoid arthritis (RA) in the 1990′s. She was working in television as a fashion and beauty reporter (and as far as I know, she continues to work in this capacity). She believed that in her field it would have been professional suicide to let anyone know that she had RA, so she hid it, even though she was often in unbearable or near unbearable pain. Schwab wrote about many of the details of her professional world and how difficult it was for her to manage her pain and her job simulataneously. Like many other chronic illness patients, she suffered emotionally from living with a debilitating disease. Schwab was lucky in several respects, however, she had a doctor who she trusted and a husband who was a major source of support for her. Eventually she found a treatment that helped her to attain long-term remission. Ultimately, after years of hiding her RA, Schwab switched gears and decided to help bring awareness to what it is like to live with RA.

A deeper analysis:

Schwab recounts in great detail the emotional struggles that she went through in the years before she found an effective treatment. In so doing, she tells the reader how she coped with living with RA. As a veteran patient of an autoimmune disease (inflammatory bowel disease) that is thought to be a “cousin” to RA, I could identify with many of the treatments and coping techniques that Schwab wrote about. But I’m not only an IBD patient, I’ve also done research on coping, and I think that we can learn from Schwab’s experiences.

Coping strengths:

* Perseverance – Schwab exemplified perseverance when she refused to drop out of a research study that lasted 9 months. She was not allowed to take any other medicines and she was given only a placebo (though she did not know that at the time). She endured a terrible flare during the last 3 months of the study, but she was determined to stick it out because she knew that if she did, she would be eligible to receive the real medicine after the study. It was that medicine that eventually helped her to achieve remission.

* Asserting needs – Schwab was fortunate that she had a physician who she trusted, but when he referred her to another physician, she was clear about her needs with this other physician. He had suggested that she go back on a medicine that had once caused her to experience dangerous side effects. She knew her limits and declined. She knew which treatment she wanted and she went after it. Asserting one’s needs skillfully exemplifies one of the behaviors of an “exceptional patient.”

* Expressing herself – Schwab hid her RA for many years and sometimes denied her feelings, yet she also expressed her feelings to her husband, her physician, and even her trusted assistant. She did not keep her feelings bottled inside all of the time and the support she got from these individuals was no doubt invaluable. Eventually she took writing classes and started to express her inner world, which likely led to the publication of the book.

* Holding on to what mattered most – Schwab really valued her job and her relationship with her husband. She was determined to keep working no matter what and to ensure that her relationship didn’t falter. Even though her job was super-stressful, it provided her with a sense of identity, a role in the world, self-mastery, as well as meaningful challenges, stimulation, and interactions with people. She did her best to maintain a strong sense of identity as a person who was much more than a patient.

Coping strategies that can backfire:

(Note: My analysis of these coping efforts is NOT meant to be a criticism of Schwab, for I know that I have used the same coping strategies at one time or another. I admire Schwab for coming forward and telling her story, and again, I think that we can learn from her experiences, that is why I’m writing this section.)

* Hiding the disease – I know that many chronic illness/pain patients hide their medical conditions in the workplace. I’ve done it myself. Of course we don’t want to be discriminated against or stigmatized. I understand all of the reasons for hiding one’s illness and pain. I’ve been there and I get it, truly. The problem is that hiding symptoms is a tremendous psychological burden that the body is then forced to bear. I’ve studied psychophysiology and I can tell you that hiding an illness and making up lies to keep people from knowing your secret leads to a high level of chronic stress, which can be detrimental to the body. A few years back there was a meta-analysis on chronic stress and immune system function with over 300 studies on the subject and the conclusion was that chronic stress negatively impacts immune system function. Chronic stress does not cause autoimmune disorders, but it can exacerbate them. Schwab’s high-profile job provided her with some validation that she was a worthy person and she wasn’t willing to leave that behind due to insecurities from a dysfunctional childhood upbringing, so she did whatever possible to keep working. I respect her decision and I understand that she didn’t have a typical 9-5 job, she was a freelancer in a field that was extremely judgmental, but I don’t think she realized the toll that hiding her illness and pain had on her, both mentally and physically. It is hard to know what to do in situations in which we could be stigmatized, but in my experience, it is better to educate people than to let them judge you for what they imagine is happening to you.

The stigma comes from people’s own fears. People project their fears and judgments onto people with disabilities and chronic illness because they’re scared of being sick or having a disability; they’re scared of being vulnerable. We have to stop that shadow in its tracks and let healthy people know that we’ve got a lot of gifts to give society (see my non-profit site, Patient Corps). I once had a boss who told me after a life-threatening flare of IBD that her organization was too small to lose someone for that long (I was on disability for about 3 months) and I should look for another work opportunity. That was hard to hear, but actually I did find a much better job. At one interview for a full-time job, I confessed to my potential employer that I was worried about working full-time because of my illness (IBD) and she worked out a deal with human resources so that I could work three-quarters time. I got paid less, but it was worth it because I stayed healthy. We’ve got to join together and let society know that there are hundreds of millions of us in the world who have chronic illness/pain, we have valuable contributions to make to the workplace, and we’re not going away. Maybe that sounds idealistic in these hard economic times, but the truth is that the numbers of people with chronic illness are growing every year (the estimated growth rate in America is around 1% annually). We’re really not going away.

* Self-victimization – On the one hand, Schwab wrote that she refused to let her RA define her, and yet she also wrote about how RA had “robbed” her of many things. She did not want to let it “ruin her life” and yet she perceived that it was trying to. It is easy to personify a chronic illness or chronic pain condition. It feels personal. It feels like this disease or this pain is out to get us. But it’s not. A chronic disease has no motive, no personality, and nothing personal against us. If we start to make a disease into an entity and accuse it of robbing us of something, we become victims of our own perceptions. I’ve done this myself. I remember feeling so much hatred toward IBD for stealing my youth (I was but 24 when first diagnosed) and stealing my memory (used to have a near photographic memory but now CRS) and stealing this or that. And then I realized that it was just a perception that was making me suffer. The illness was just a collection of physiological occurrences happening in my body. I could interpret those physiological events in a myriad of ways and if I wanted to inflict distress on myself I could tell myself that I was somehow a victim of the disease. Fortunately some part of me refused to believe that I was a victim or that I was fighting some entity. I could free myself from a lot of suffering by simply seeing that I was never a victim of some imaginary entity. All of us have that power!

* Denial – I was once the queen of denial, I know how attractive denial is as a coping strategy. Just a little denial and the feelings get pushed down, “under the rug,” and you don’t have to deal with them directly for a while, but they don’t stay there for long. Schwab was really honest in saying that her use of denial stemmed from a dysfunctional family upbringing. I believe that we often apply the coping methods that we learned in childhood when we are faced with the challenge of living with a chronic illness. Again, I admire her for being able to speak candidly about her childhood and its effect on her choice of coping efforts. And I think denial can be harmful to our emotional well-being. We’ve got to stop self-deception and face our fears, no matter how hard it may seem. The only way out is through (if you need help in dealing with your emotions, please listen to a guided meditation on working with difficult emotions). I believe that Schwab realized that denial was more harmful than helpful overall.

* Pushing one’s limits – One of the most difficult aspects of living with a chronic illness is finding a balance between doing the activities that bring meaning and purpose to our lives and listening to our bodies and heeding their warnings. Schwab listened to her body when it was “screaming” at her, such as at the Oscars, but she often pushed the limits of what her body could do. I’ve written about one of the gifts of illness as being a movement toward embodiment. Instead of ordering our bodies around, as we’re used to doing in our manic productivity-driven society, illness gives us the opportunity to listen closely to what our bodies are saying. We have the opportunity to reconnect with our bodies and learn how to take care of them. I truly hope that people with chronic illness do not try to imitate Schwab and push their bodies hard to fulfill work obligations. I know that you don’t want to lose your job, but pushing your limits is not a sustainable strategy and it tends to backfire. Ask for help (I know it is hard!). Practice yoga, mindfulness meditation or qi gong to counteract the negative effects of your stressful job. Listen to your body and learn from it. It has a lot of wisdom, even and perhaps especially when you are ill and in pain.

Final words about the book:

I read the book because it was a memoir about living with a chronic illness. I was not expecting the depth of details about the author’s professional life and those details turned me off. I have no interest in fashion or beauty or celebrities and it seemed to me that her editor couldn’t decide which audience to target, people with chronic illness or people interested in fashion, beauty, and television. The combination didn’t work for me and the details about her professional life made it difficult for me to feel emotionally connected to Schwab, even though we shared many common experiences. But then, I should have known from the title that fashion and television would play prominent roles in her story.

I applaud Schwab for the last 10 pages of her book. In those final pages she made a strong case for why readers should care about arthritis and why she is trying to raise awareness of it. I also appreciated her reflections on how much she has personally changed since first being diagnosed. She has a lot more compassion for others with chronic illness, for example. One of the last lines she wrote was, “It has made me reflect on what is important in life and changed me on the inside, where it matters.” Amen.