Living with Illness

Living with the Problem

Living with illness and disability is a unique experience for each person and family who does so. Certain factors contribute to this. It makes a difference at what point in your life you become ill or disabled. If you are a two-year-old diagnosed with asthma and live with a single mother who must care for four older children, you will have a different experience of asthma than if you are a married woman of thirty with no children who has her first asthma attack on vacation.

Likewise, you will have different experiences if your illness or disability is acute or chronic; if it is mild, moderate or severe; if it is well or poorly-understood; and if there is known or no known treatment for it. Imagine you are a young adult in the first year of living independently and being told you have a common liver infection that will make you feel terrible for a month but then you will get completely well. Now compare that with being told you have a rare liver disorder of unknown origin for which no treatment is available and the prognosis is uncertain. You, your family and friends are likely to have quite different reactions to the two scenarios. And your doctors may, too.

Living with illness on a daily basis naturally varies according to what the condition is. Some illnesses, like diabetes, are not in and of themselves painful in the early stages, but do require attention to diet and monitoring of insulin levels throughout the day. People with diabetes can't really forget it for long without negative repercussions. If you are parenting a young child with diabetes, then you have work to do all day.

• You must stick your child with a needle to determine his glucose levels so that you can provide him with the exact type and quantity of food he needs to eat.

• You may have to monitor your child to be sure he doesn't sneak food that will harm him.

• Parents can feel worried all day long.

Other illnesses cause pain and fatigue and disrupt a person's ability to perform usual duties. A mother with lung cancer who is being treated with surgery and chemotherapy will be too tired and in too much pain to go to her job, care for her children, or tend to her household. The family may be thrown into crisis by their fears about her possible death, the loss of her income, and her inability to manage the household and care for her children.

People with illnesses and disabilities do better if they learn ways to cope effectively. Fortunately, many professionals are trained to help individuals and families learn effective coping skills.