The Interpersonal Experience of Disability
A catastrophic injury, or an illness that results in permanent medical impairment, is usually a life altering event. It requires time for you and your family to adjust.
The physical needs resulting from the injury are the first focus of attention. However, as you improve, the interpersonal changes in your life may take center stage. You may struggle with issues of privacy, dependence, self-image, public reaction to your disablility, or the meaning of your experience.
Invasion of Privacy
You may find a huge difference in your sense of privacy. Prior to your injury, you probably perceived yourself as very independent, in activity and thought. You may have lived a very self-reliant and physically active life. Now, you may feel that there has been an invasion of your privacy.
For example, if your injury resulted in incontinence, you might require assistance with bladder or bowel management. As a result, a family member, friend, or home health worker is present during your bowel and bladder programs. Your sense of privacy, especially immediately following the injury, can seem violated.
As time passes, you may learn enough about these programs to perform the activities with little or no assistance. And as time passes, most people become more comfortable with the presence of others while they perform their daily activities. As you adjust to life with a disability, you may begin to view the person assisting you as a source of help and guidance, rather than as someone who invades your privacy.
Lack of Control
Another frequently mentioned change is in your level of independence and the control you feel you have over your life.
Before your disability, you had the freedom to leave home when you wanted, or drive your car, but now you're more restricted. You may be feeling that your life is dictated by doctors, nurses, family members, or friends. You may have to stick to a schedule of hospital or medical appointments, or you may be required to take medication at designated times every day.
Your life now involves more medical services than before, but you will learn more about your bodily systems and ways to manage your physical needs. You'll become more accustomed to your medication and treatment schedule. And as you recover, you might require less medical intervention than you do now!
Overall, you will become more familiar with life with a disability and will be better able to control your schedule, your daily routine, and daily living. Your strength should improve, which often results in increased independence, especially in activities of daily living.
Many people report a loss of self-esteem and a change in self-image. If you thought of yourself in terms of your physical capacity prior to the injury, you may now feel you are "worth" less.
For individuals who worked in physically demanding jobs or participated in active sports, adjusting to a more sedentary lifestyle—especially right after the injury—may be quite a challenge.
However, just as our perception of ourselves changes with age, so too will you begin to see yourself in terms of a new set of physical capacities. As you adjust to life with your disability, you will find ways of redefining yourself as a contributing member of both your family and your society.
In some ways, a physical disability provides an impetus to explore new avenues in ourselves. For example, someone who worked as a laborer prior to the injury may now have the time and desire to learn a new skill or hobby.
For others, the option of wheelchair sports may be appealing as a way to continue to be an active person with a disability. Still others find that working with children with disabilities is a rewarding way to contribute to the lives of others.
Altered Public Reception
Just as you view yourself differently, you will experience a change in how other members of society view you.
If your illness or injury necessitates a wheelchair or other ambulation aid, you may find people "looking at you" or asking questions about your disability. It might be uncomfortable in the beginning, but eventually you will be able to use these situations as an opportunity to educate others.
It's important to recognize, though, that some people have prejudices against others who seem different from them. These people are in need of education, too, but they may not be receptive to honest, frank communication about how your injury or illness has affected your life.
Search for Meaning
Many people who experience disability question the meaning of their illness or injury. Some wonder if they are being punished. Others may believe that their disability is a part of God's plan, and will lead them to greater fulfillment.
Despite what your ultimate conclusion is about your disability, questioning the meaning of the event is a common process. For thousands of years, individuals have tried to make sense of their existence, including uncovering the meaning of life-altering events.
While each person's journey is specific, many people find answers to their questions in religious services, dialogue with other individuals with disabilities, or other sources of inspiration. The process of questioning the meaning of the injury or illness that caused disability is certainly a process of growth and may lead you to a better understanding of yourself and your situation.
The interpersonal experience you have following a catastrophic illness or injury may have many levels. You may experience a change in your personal relationships (see Caregiver section), your job (see Vocational section) or your psychological status. And yet, your personal experience of adjustment to life with a disability may go unmentioned.
It's important to take time to explore your personal reaction to your disability. In doing so, you may find answers to questions about your daily activity, your psychological well- being, or your understanding of what it means to live life with a disability.