Years ago, I sat in a yoga workshop and, as is common practice, the instructor went around the room asking the participants if we had any health concerns that she should be aware of or issues that we would like to work on. When it was my turn, I shared that I have lupus and that some of my joints and especially my spine can be a bit cranky. At the first break a younger (most everyone in the workshop was younger than me) woman walked up to me and shared that she too had lupus, but that she had never told anyone outside of her immediate family.
Many who suffer from chronic illnesses have told me they are ashamed of the fact that they have them. Shame is an emotion in which the self is perceived as defective, unacceptable, or fundamentally damaged (Pedneault, 2009). I believe that shame is the reason many suffering from chronic illness do not share that they are sick—and I understand this completely. I too have experienced feelings of being defective or not enough. I am a person who is extremely conscientious. When lupus and other physical limitations prohibit me from fulfilling the tasks and roles I feel are important, I am ashamed. I do not want or like to be viewed as less than others or less than my best self.
Lupus and other chronic illnesses can rob a person of their identity. Imagine the active, engaged employee who is now on disability. This reality is all too common for those living with lupus and other chronic illnesses. Unable to go to work to earn the paycheck the family has counted on, these individuals not only feel physically unwell but are left adrift at home. The person now feels shame (unacceptable and defective) and guilt joins the party. Shame is often confused with guilt, which is a related but distinct emotion in which a specific behavior is viewed as unacceptable or wrong, rather than the entire self (Salters-Pedneault, nd).
It is difficult to form a new and positive identity of self when chronic illness is diagnosed, especially one that includes illness and may not include roles that were held in the past. We live in a society that values productivity and strives to get the most done in the shortest amount of time. The people we see in ads on TV and in magazines are healthy individuals. These feelings of shame and guilt are compounded by the fact that no one wants to feel like a burden to others or be a drain on their family. Chronic illness can be expensive and time consuming. Family resources that are budgeted for specific household expenses and sometimes fun must be reallocated to medications, tests and surgeries. This can place huge financial stressors on top of an already difficult emotional situation and the person with the disease may feel like a burden rather than a contributor to the family.
All of this is reality and often leaves the person at the center, the person with the illness, ashamed of the person he or she has become. I am extremely fortunate. I have an incredibly supportive family. Recently, I was complaining about the thousands of dollars we had to spend for a medication and treatment that I needed. My husband looked at me and said, ” Cindy, there is nothing more important to me in this world than you feeling good.” His comment kept me from slipping into despair over the situation. He has always been willing to do whatever it takes to support me. He knows I want to feel good. I know I am happier and a lot more fun to be around when I am not dragging through my days waiting for nightfall so I can go back to bed.
I also know that not everyone has a supportive family and for this I am very sorry. Shame is held at bay when I can talk about my feelings honestly without negative consequences and when love and support is given, even at the times when I feel unlovable myself. I do not always love Sick Cindy. It just isn’t who I want to be in life. Like my husband, I am much happier on the days I feel well. After a recent intravenous infusion, I saw a friend and she said, “Cindy, I can tell you are feeling better, your eyes sparkle again.” I like my sparkle; it makes shame and guilt run for the hills.
“Shame, Knowing, and Anthropology: On Robert I. Levy and the Study of Emotion” (Pedneault, 2009). Ethos. Berkeley: Vol. 33, Iss. 4; pg. 493, 6 pgs
Salters-Pedneault, K., PhD. (n.d.). “What is Shame?” Retrieved February 11, 2016, from http://bpd.about.com/od/glossary/g/shame.htm
About Cindy Coney: Ambassador of hope and author of The Wild Woman’s Guide to Living with Chronic Illness, Cindy Coney is a nationally acclaimed speaker, trainer, human resilience expert, and philanthropic force. Dedicated to helping both children and adults achieve optimal health and success, Cindy has taught thousands of people to move beyond coping with limitations to recapturing joy and fulfillment in their lives.
Diagnosed with lupus in 1980, Cindy has since driven a race car 124 miles per hour; completed the Chicago Marathon; championed countless nonprofit organizations; presented to the World Lupus Congress as a keynote speaker; and shared her inspiring, empowering story from Belize to Baltimore.
Follow Cindy’s Blog at www.cindyconey.com