Getting by with a little help from your friends, family, and other amputees

One way to expedite this process is to talk to other amputees, preferably, those who are similar to you before undergoing the surgery. Knowing what to expect significantly decreases both physical and psychological distress. Unfortunately, few amputees (only about 10 percent) are offered this opportunity. But those who do talk to another amputee before surgery are much better adjusted after their surgery than those who do not.

A second option is to talk to another amputee shortly after surgery but only about 25 percent report having been given this opportunity. It is hard to explain why so many people undergo amputation without being more aware of the challenges that lie ahead. Although some amputations are unexpected (as in traumatic injury), limb removal usually is not unexpected but, rather, the result of prolonged attempts to save the limb. More-over, a large number of amputees are more than willing to visit with patients both pre-and post-surgery. Thus, it appears that you may have to take control of the situation yourself. If you are facing, or have recently experienced, amputation, ask (demand, if you must) that your healthcare and service providers refer you to other amputees in your area. The information they can provide, most likely gleaned from their own trial-and-error endeavors, may well be invaluable to you and those around you.

Despite their lack of forewarning, many amputees adapt quite well, but substantial percentages do not. In collaboration with colleagues at the University of Pittsburgh, Carnegie Mellon University, and Hobart and William Smith Colleges, research at the University of Georgia has been focused on identifying differences between these two groups. The result is that we can offer some additional clues about factors that reliably predict adjustment. Among these are: (1) extent of surgery, (2) patient age, (3) financial resources, (4) individual differences in personality, and (5) support available from close others. A person who adjusts most readily is one who has the best-case scenario in all areas. This does not mean, however, that all are necessary. Indeed, they are closely intertwined, and some can offset deficiencies in other areas.

Preservation of the knee (or elbow) joint enhances use of a prosthesis. This has to do with the actual physics involved, but it also relates to overall physical condition, the presence of complicating illnesses, and psychological factors such as personal motivation. For these (and probably other) reasons, many older adults are never able to use a prosthesis. Does this mean that older adults are less likely to successfully adapt to amputation? Not at all.

In fact, research strongly suggests that elderly people adapt better to all forms of chronic illness and disability than do those who are younger. This may be because illness and disability are more expected in old age and, therefore, of less concern. Our research shows, however, that it is experience rather than actual age that makes the difference. Older children (adolescents), who have had more experience with chronic disabilities, are less distressed than are younger children who have, by necessity, had less experience. The same is true for older versus younger adults. Thus, time appears to be an important factor. The longer people deal with a health problem, the better adjusted most become.

Research by Dr. Richard Schulz and his colleagues at the University of Pittsburgh indicates that this is the case for even severely disabling conditions such as spinal cord injury. Over time, most evaluate their quality of life as being as good as (or even better than) people who have no disability. But time is not the only factor that influences both short- and long-term adaptation.

As crass as it may seem, financial resources help a great deal. Our own research clearly shows that adequate income facilitates the ability to conduct normal activities, and this ability then leads to less depression. Additional information provided by participants in our research helps explain why. For example, a retired dentist, who had never married, reported feeling fortunate that he was financially able to hire a companion. He stated, “Money can make it easier to deal with almost any of life’s difficulties.”

Another man, a 48-year-old victim of a job-related accident, had lost both legs at the hips. However, the large financial settlement he received allowed him to travel extensively with the wheelchair Olympics program. He reported having “a nice girlfriend” and viewed his life as better than before his accident. Both of these men were extremely well adjusted.

Now, let’s assume the optimal situation: An amputee has retained the critical joint, is older, and has ample financial resources. Is he or she necessarily well adjusted? The answer is no, because other factors also play a role. Among these are aspects of the individual’s personality. For example, people whose dispositions are more neurotic (e.g., they more easily become discouraged, feel like giving up when things go wrong, feel helpless, and want someone else to solve their problems) and less optimistic (e.g., they frequently feel that if something can go wrong for them, it will, and rarely count on good things happening to them) are less likely to adapt to any form of life stress. In addition, we have repeatedly found that, when faced with a disfiguring medical condition, people who are more self-conscious are more likely to avoid activities conducted in public and to experience more depression as a result of restricting their valued activities.

The support that other people provide can make a critical difference. But social support is not a one-way street — success depends on both the supporter and the recipient. New amputees often find accepting help difficult. This is understandable. It threatens one’s sense of independence and, perhaps, the most basic sense of self-worth. But people who are willing to provide help, despite the fact that it takes away from other aspects of their lives, are also those who care the most about your well being. They may falter in their efforts; they may want to help too much or they may be afraid of helping too much and, thus, help too little. Knowing exactly what to do is complicated by the dynamic recovery process that influences the amount of care an amputee needs.

Communication is of the utmost importance during this period. Do not be afraid to ask for help you need but also do not be afraid to refuse help that you do not need. People who are close to you will appreciate your guidance because they are likely to have no clear concept of what you actually need. Working “in the dark” is extremely stressful in any situation. Above and beyond everything else, try not to take out your frustration on them. Demonstrate that you appreciate their efforts and that you do recognize that they are motivated (perhaps erroneously) by their concern for your welfare. Communicate! Talk about your feelings and encourage your close others to express their feelings as well. Chances are that they are as scared and uncertain as you are. Sharing these fears and uncertainties will strengthen, rather than weaken, your relationship.

Of all the factors known to influence adaptation to amputation, interpersonal relationships with others may be the most critical. They can overcome more severe physical disability, age-related adjustment problems, less-than-optimal financial resources, and potentially hampering personality traits. It can be hard to focus on a significant other’s feelings when you are going through a major life transition of your own, but the effort is more than worthwhile. You need to make every effort to understand the other person’s perspective, and it is of extreme importance that you continue to provide some relationship rewards that supersede your medical condition. Compliment your partner. Indicate that you appreciate his or her efforts. Spend quality time together, even if it is no more than relaxing, watching a movie, and eating popcorn. Taking the initiative will not only make your partner feel that you recognize his or her feelings and concerns but also will give you the personal satisfaction of being able to influence this, perhaps most important, aspect of your life.

About the Author:

Gail M. Williamson, PhD, is an associate professor, Department of Psychology at the University of Georgia.

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