Family Reactions to Chronic Illness

Lawrence Kron, Ph.D.

There is no experience which quite equals that which occurs when a member of our family is stricken by an illness. When we are dealing with a chronic illness, the experience is repeated each time there is an exacerbation of the illness. Often ignored in the process, are the stresses and strains undergone by the family members. Hopefully we can become more aware of their needs, needs which are often inadvertently cast aside. Only by recognizing them can we hope to relieve some of the pressures the family members experience.

One of the first difficulties family members confront is the anxiety engendered by not knowing what is going on with the patient. This problem parallels the patient’s own concerns. For example: “What’s wrong with me (her, him)? What can be done? Will it be debilitating or fatal?” Family members both want answers and don’t want them at the same time. Responses vary, from totally ignoring the condition and expecting the patient to function exactly as before, to a hand-wringing over concern and over solicitousness of every need of the patient. Either extreme is highly detrimental to family relationships. Ignoring the problem contributes to the patient’s sense of having failed the family. It also often produces a desire in the patient to compensate by trying to do more than is physically or emotionally healthy, with potentially dire consequences. On the other hand, becoming overly involved with the patient may be infantilizing and can add to an already lowered self-esteem, and produce a slowly growing resentment in the family members.

A more healthy involvement of family members includes education, communication, and support. Most anxiety and reactions to the illness are the consequence of “not knowing.” Family members should be as conversant with the patient’s diagnosis, treatment, and prognosis as is the patient. Sharing of information between patient and family members is a necessity. This includes family members sharing their own feelings and concerns about whatever is on their minds, not just the illness. The patient may have a chronic illness, but is not helpless or incompetent. Being helpful to family members usually has a salutary effect upon patients. Finally, family members need to be involved in the illness itself, but only in ways that are useful from the patient’s point of view. To do things for the patient, which he or she could do on his or her own, will frustrate the patient who has a need to be productive. To refuse to help, when the patient is helpless, will send a message that the family can’t tolerate the illness. Family members need to distinguish these situations. Helping when help is truly needed, and backing off when it is not, are both kindnesses to the patient.

Looking back at these few paragraphs, one can notice how easy it is to focus on the patient’s concerns. Family members need to be constantly aware of their own needs and concerns. Because the patient may not be able to contribute as in the past and family members may have to do more, family members need to program into their routine’s time to “recharge their own batteries”. Failure to do so will result in a growing resentment which will seep out in one’s mannerisms, tone of voice, etc., all to the detriment of family harmony.

It’s important to remember that as family members, you count too. Your emotional comfort and well-being need just as much nurturing as do the patients. In the long run, tending adequately to your own needs will make you a happier, more pleasant person to be with, and this is the best atmosphere for the growth of healthy family relationships.