Alida Brill

Alida Brill

Chronic Healing

Saving Face

Moving forward boldly despite a drug's betrayal.

Posted Nov 29, 2010

The phrase to "save face" has been around a long time. It's been part of English vernacular since the 19th century. The concept is a core social value in Asian cultures, among others. The meaning has remained stable across time. Saving Face signifies a desire—or defines a strategy—to avoid humiliation or embarrassment, to maintain dignity or preserve reputation. Eleanor Roosevelt's familiar quote: "No one can make you feel inferior without your consent" is an extension on the theme of saving face.

Our emotional equilibrium requires inner strength and a sense of self. However, when we most need our protective internal guardrails they're not always securely bolted to our psyches. We want to believe others will grant us refuge from humiliation, but it doesn't always play out that way in human interactions. Most of us have been guilty of embarrassing someone, either willfully or inadvertently. Humiliating someone in revenge is not an admirable behavior or trait. More often, we accidentally cause another person to lose face due to misunderstanding, lack of information, or because we're startled or shocked.

Faces have preoccupied me for a specific reason—steroid treatments for chronic illness. Many of us have an intimate connection to steroids. The drug is referred to as steroids or corticosteroids. Its particular forms encompass the much-prescribed prednisone and there's Solu-Medrol administered intravenously, as well as a variety of other formulations.

As an effective immunosuppressant, it's been prescribed and taken by millions of people with chronic disease over many decades, and is used in other conditions including allergies and organ transplants. Steroids reliably make symptoms disappear (or so it seems) and the drug saves lives. I will not presume to provide an authoritative medical discussion here. I'm not a physician or a biochemist doing drug research. Suffice it to say, there are many side effects.

As patients, we're not always aware of all that might and often does happen. In an acute crisis, a doctor may not have time to address these issues. If we're in a serious flare or potential life-threatening situation, time is essential and doctors move swiftly. Steroids are often a first line of defense. Other doctors, perhaps fearing patient non-compliance, might withhold some information. With Internet access it's easy to discover the side effects. Countless websites are available with a few keystrokes. There are monitored sites with useful data and suggestions. However, there are countless unfiltered ones with erroneous or careless descriptions and frightening accounts. It's always best to get information from a trusted medical source.

I have taken steroids (from pre-adolescence) in a variety of forms and in changing doses, over short and long periods. Steroids can change your overall appearance (usually there's weight gain) but it virtually always alters the shape of your face. On a small or medium amount if taken long enough your face becomes puffy, but with larger amounts, we develop what is called "moon face." At a conference, I met a younger woman with Lupus taking a high dose of prednisone. "I look just like a jack-o-lantern at Halloween," she confided to me, adding she was depressed. She fought back tears but continued to discuss how Lupus was not going to win and she was returning to her job.

I've felt just as she did and have looked the same. The facial manifestations of steroid treatment are the most obvious evidence. There are other serious adverse reactions, which can include mood swings and anxiety, agitation, insomnia, and sometimes drug-induced "mania". The list of possible reactions to steroids fills pages in medical reference books in addition to the enormous quantity of information on the Internet. Despite the negative impact from ingesting steroids, it should be emphasized again that the drugs undeniably save and extend lives. I'm presently stuck on the side effect that pertains exclusively to our faces because in the last months I've spent lots of time in the Infusion Room at my hospital. It's the place where the presence of moon faces is very apparent.

At this juncture, steroids are no longer particularly effective for me. They don't control flares even when I get the maximum amount of Solu-Medrol pumped into my veins for a series of days. The inevitable progression of my disease now requires the committed use of stronger drugs. (I was diagnosed with atypical Wegener's—an inflammatory autoimmune disorder—after many years of conflicting diagnostic theories.) I'm on a new protocol with a "smart" chemotherapy, which comes with other reactions and concerns. Ironically, I have my original face again; it's an older face but one without the drug's imprint. But during my hospital infusion days, I witness the next generation of young women with the face I had for so long. Steroids can make a girl or young woman feel cheated of beauty before she's fully attained it. If you're put on steroids as a somewhat older woman, you're robbed of an accustomed set of facial features. There's a sense of defeat and anger—sentiments readily expressed when patients are together in groups if doctors are absent.

I've met young women who try to cover their faces with scarves or by pulling turtlenecks practically up to their chins. Others utilize hats of all styles worn low and over the face, presumably as camouflage. I wore dramatic hats with large brims during the worst years. It was a fantasy I developed. If I couldn't see much of the world I was probably invisible. There are no effective tricks; our faces betray us. How can you save face when you are gaining face in strangely inappropriate places? I write about girls and women not to exclude boys and men, but because I know personally only the journey of what steroids do, from girlhood to young womanhood to mature womanhood and beyond. I hope boys and men will enter into the conversation about chronic disease and share their insights and experiences.

For some of us, survival is dependent upon a lifetime partnership with the drug. When vulnerable or psychologically fragile most of us aren't terribly clever at devising strategies to keep our dignity and identity. At least I wasn't very good at it. But I learned from older women who had been unwell longer than I had been. My parents reminded me I was still the same person inside. The mother of a close friend taught me how to accentuate my eyes with make-up to draw attention away from the rest of my face. My mother wasn't a consumer of cosmetics and so this was a revelation.

When asked why I looked so different, I chose how much information, if any, I would divulge. I wasn't applying for a bank loan and therefore full disclosure wasn't required. I began to locate the rest of me—to reclaim the part that wasn't visible. I could still be a good friend and accept friendship. I acknowledged the aphorism "beauty is only skin deep" was probably true but hard to accept. My parents and close friends helped make me feel whole and not broken. Despite all of their support and encouragement, I still hid from view too often.

We are increasingly preoccupied by physical beauty and particularly by facial beauty. We're saving face in different ways. There's Botox and a variety of injectable fillers to smooth away years and imperfections, add contours, plump lips and so forth. There are more complex and involved plastic surgery options available for both women and men. Dermatologists and surgeons routinely perform these procedures and surgeries. We're in a frenzied, if not desperate, search for the perfect face, at almost any cost or risk. This cultural obsession screams at us from magazines and movies and television programs and advertisements. The message is we can look the same at 50 as we did at 20. That's impossible, even if you have the money and the health to undergo repeated facial renovations.

Betty Friedan, the noted feminist and one of the founders of the modern women's movement, told me it upset her to see the number of women undergoing plastic surgery—this observation was made before the trend had begun in earnest. She said, "I think it erases a person's chronology." I asked what that meant. She explained lines and wrinkles and even the dreaded "crow's feet" told your story—of happiness, of struggle, of love and heartbreak, triumphs and defeats—the rich and layered emotions that comprise the experiences of living fully. As an afterthought she added the changing shape of my face told a brave story of coping with disease. It didn't seem significant to me then. It does now.

I detested my moon face, undoubtedly as much as the young women I meet today. As the holiday season approaches, most of us want to look our best, and this brings a particular sadness to some of us. There were times when I declined events, parties and gatherings because I was so bloated. Looking back, I regret deeply the things I didn't do, what I missed, and the company and companionship I needed but avoided because I was ashamed of how I looked (or how altered I believed I was). There remained a nagging concern others would not permit me to save face when mine appeared to be exploding in front of their eyes.

Doctors and nutritionists advise us what to avoid in our diets. We know about sugar and salt, but steroids make us hungry! Special menu options or nutrition advice is not my specialty or expertise. I am a writer who, at a fairly late stage in the experience of illness, decided to tell the truth about a life lived with the presence of chronic disease and about the roller coaster of steroid treatment. I do offer this thought—we save face by remembering we're not alone, inferior or ugly. We've nothing to hide and there isn't a requirement to appear in cosmetic disguise if we don't feel like spending an hour before the make-up mirror. We're accorded our own share of dignity and self-respect by our persistent refusal to give in, give up, or go away.

Even if you're feeling your real face has been "lost" to steroids, celebrate your existence this holiday season. We are our stories. Sometimes these stories are written on our faces and do tell tales of bravery and resilience even more than of suffering and sorrow. With enough determination, and in unity, we save face by going forward because we are still ourselves. I hope for and have faith there will be a future that brings new drugs, and ultimately cures. I look forward to a day when steroids are historical footnotes and not a reality in so many lives.

Advocate for more research and awareness and education about chronic diseases. Developing a personal practice of compassionate love toward others can help heal old wounds, for those who receive the compassion and for those who give it. These are lasting gifts we can offer each other over the holidays and throughout the year, whether we are well or unwell, on or off steroids.

For more information about Alida Brill and her work, visit her website.