Living Well with the Losses of Lupus

Survival – emotional and physical – is tricky business. It involves a balancing act, which centers on the ability to regain a steady state when powerful agents or events throw a person out of equilibrium. Imagine a circus tightrope walker. A sudden shift in the tautness of the line can cause even the most experienced performer to lose her footing and fall off balance. Such loss of control can threaten survival. Indeed, it is that threat which causes us to be mesmerized by the tightrope walker. We are awed by her ability to survive, by her knowledge of how to get balance back when it is lost or, when necessary, how to fall into a safety net without consequence. Survival of both the mind and body often depends not only on maintaining a balanced state but also on regaining control or minimizing damage in the face of unavoidable losses. Living, and especially living well, depends on a little bit of luck and a lot of practice and hard work.

No one of us walk a perfect tightrope. We are daily required to alter how we go about things as the imperfections of life present themselves to us. Adaptation to change is a constant in all our lives. Those who live with lupus are especially challenged to stay in equilibrium and remain balanced, as this is a disease that requires more than adjustment at the time of diagnosis. Lupus demands a lifetime of refining or redesigning path and destination, as the disease remits and relapses, over and over. With each new flare or newly emerged disability comes another time or arena of loss. Living well with the losses of lupus is a tricky act to perform.

The losses of lupus are as many and varied as the people who have it. Each of us is unique, not fully like any other, and so our experience is often idiosyncratic. Nonetheless, some losses are common to lupus patients, and they can be placed into one of two categories. First, there are the tangible losses – e.g., those that may come from an appearance changed by disease or medications, from an income decreased by lost work time, or from restrictions on outdoor activity. Second, there are the intangible losses – e.g., those that come from diminished self-confidence, from the necessity of confronting one's mortality, or from feeling dependent on others. Coping successfully with the losses of a life with lupus takes a great deal of time, courage and effort. And because of the chronic, up-and-down nature of the disease, it is a process that never fully ends. Living with lupus can feel, at times, like an endless tightrope walk on a bad day at the circus!

Just as we each have our own unique losses, we also develop our own special ways of coping, of regaining our balance, of surviving. But there are some universal truths about adapting to loss. The model of successful coping that I find most useful (see footnote) is based on two critical ideas – that losses must be mourned and that the grieving process is actually a group of tasks, each of which must be carried out over time and with considerable expenditure of energy. In other words, adjusting to loss is long, hard work. It is no wonder that some shy away from doing grief work and choose instead to cope in ways that are less effective in the long run but much easier and less painful in the short-term.

Mourning losses, thereby reinstating emotional equilibrium, requires grief work. This work can be divided into four different tasks which may be accomplished in any order and may be worked on simultaneously. In that sense, what is described here is not a stage theory of mourning. One does not proceed in lockstep fashion through a series of stages to reach an adaptation to losses. Human beings like to think in terms of stages but we don't function in such a rigid way. Instead, we tend to work on an issue for awhile, move on to other concerns, and then revisit the issue when we are ready to proceed with it.

One of the tasks of successful grief work is to accept the reality of the loss. The losses of lupus can be numerous and initially overwhelming. It is not unusual for a caller to our office to say that she has had a diagnosis of lupus for several months but is only now ready to educate herself about the disease and seek support. It takes time to get over the disbelief that follows shocking news and to acknowledge the losses and changed needs that accompany chronic disease. How is this accomplished? Primarily by talking, by “telling the story” of the loss, articulating what has happened, and how and when it occurred. This telling must be done over and over and it must be heard by willing listeners. With each recounting of the tale, what has changed or been lost becomes more real and integrated into the person's self-concept. Individuals who are reluctant to talk about themselves or who are surrounded by well-meaning others who won't discuss upsetting topics are often stuck on this task. By not telling the story to others, they are able to maintain their denial of a changed reality. This not only precludes completion of grief work; it can also keep patients from taking care of their medical needs. Denial can easily set in periodically for people who live with lupus, since disease activity may subside for long intervals, allowing for a false sense of total wellness. Whether through regular participation in formal support groups or informal discussions with friends, the losses of lupus must be given “air time” to be accepted as reality.

Another task of grief work may be the hardest of all. It entails expression of the many feelings that accompany major loss. This can be a great challenge, as many of us are taught from an early age to hide our feelings. We may have had few role models to show us how to safely and fully ventilate painful emotions such as anger (“I hate that this is happening”), guilt (“I did something bad to make this happen”), anxiety (“I feel that I have no control over what is happening”) and deep sadness (“I am utterly without joy since this has happened”). Responses such as these are normal in the face of significant loss, yet we may believe that they should be stifled. Inhibiting the expression of feelings does not destroy them, it simply insures that the feelings will be expressed in unhealthy, indirect ways. Each of us has a unique way of ineffectively coping with emotions – e.g., drinking too much to dull the pain, not taking good care of ourselves so as to feel punished, becoming demanding and rigid to feel in control The person who lives well with lupus works to find or create a therapeutic environment where the emotions that accompany loss may be fully felt and safely expressed on an ongoing basis.

The tasks of grief work also include adapting to an environment in which the lost entity is missing Simply put, the challenge is to figure out how to live joyfully and productively now that things are different. What adaptations – in the routines of daily life, in the ways you feel good about yourself, in the manner by which you make others happy – have to be made? Change requires learning to do things differently or learning to do without certain things. We usually embrace change which we have sought but resist change thrust upon us. So the new learning which follows loss often occurs slowly. It takes time and diligence to identify the inner resources (e.g., coping style, maturity, intelligence, belief system) and the external supports (e.g., quality and quantity of relationships) which will undergird the new structure of life.

The last of the tasks is one of moving forward and becoming emotionally invested in life again. When a major life change – such as the emergence of chronic disease – happens, one has to say good-bye to a way of life that can no longer be. When such loss first occurs, there is little else about which one can think or feel. It absorbs attention and emotions completely. Being a person with lupus is the only way in which one sees oneself and one sees little else but the losses that this entails. But over time, and with work on the three tasks mentioned previously, one is able to focus on and become absorbed by other things. You come to believe that having lupus is only one of the many aspects of your identity. You learn that it has a place in your life but does not define your life. This happens when the losses of lupus are real to you, and you experience the feelings around those losses and you are adapting to the changes they've created. A sense of equilibrium and a realistic perspective return. You move through and beyond your grief. You never forget what you have lost; at the same time, you recognize that you can live well with what you've got and what is yet to come.

Like the seasoned tightrope walker who has finished a performance plagued by unexpected gusts of wind and loosely tied line, you know you'll go on another day. You know the trick to regaining your balance and insuring your survival.


By Jeri L. Falk
Executive Director, Maryland Lupus Foundation
Associate Professor of Psychology, Adjunct, University of Baltimore

=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Always consult your physician on matters such as this.