Medical Author: William C. Shiel Jr., MD, FACP, FACR
Medical Editor: Catherine B. Driver, MD
Having a temporary condition that is destined to resolve is one thing. A chronic illness, however, has a completely different impact on the lives of patients and their family members. Chronic means that the patient's health is affected by the illness, either intermittently or daily, over an extended and often indefinite period of time. (A chronic illness by the definition of the U.S. National Center for Health Statistics is one that lasts three months or more.)
Although I write as an expert in rheumatic diseases (I am a rheumatologist), the topic of coping with chronic illness is applicable to people and family members who must regularly confront the impact of health problems from any illness.
Many rheumatic diseases, which are illnesses that involve the muscles and joints, are chronic in nature. For example, rheumatoid arthritis typically presents a daily challenge to those afflicted. Some days are better than others, but the morning activities are frequently affected by stiffness and pain in the joints. Breakfast often includes a sprinkling of medications. Simple preparations for the day, such as dressing, can sometimes require the assistance of a spouse. Even efforts to get places, which for most people are straightforward, can present a logistical nightmare.
So, what tips can doctors give for coping with conditions that are so potentially oppressive?
First, the patient needs to be educated regarding the unique features of his or her particular illness, including instructions for how best to take medications and engage in day-to-day activities, with the possible help of disabled-parking passes, braces, aides for daily living, etc. Additionally, there are some basic coping tips that I review with my patients.
In reviewing the following coping measures, keep in mind that each patient is different and these methods need to be adapted to fit each patient's needs, depending on his or her own particular background and health status.
The 4 Fs (Family, Friends, Faith, Forgetting)
Acknowledge your feelings, not only to yourself, but to others. Recognize that being upset about having a chronic illness is normal. Take time to ventilate these feelings and help those around you who care to understand what your feelings are and how they fluctuate. Start with your family members early on. Maintain intimacy with your spouse. Remember, family members are also affected by a chronic illness within the family unit. They can help if they are aware of the impact the illness is having on you.
Family members are often called upon to assist in the patient's daily living activities, such as administering medications, applying support devices, assisting in transportation, etc. They can best help if they understand how you are affected by the condition. Additionally, you will need to understand how your family members feel about your condition and how it is affecting them.
Enjoy your friends! That's what they're for. They also can come in very handy as a source of moral support during difficult periods. Sometimes, it can be very refreshing to review your home situation with an outsider in whom you can confide. Support comes in all kinds of packages, and you never know who's going to appreciate your condition.
Friends can occasionally be called upon to be caregivers and help in many other ways. Make new friends and consider interactive support groups. These might be found online or in your community. Access to further information and tips can come from national organizations, such as the Arthritis Foundation. These groups have as their primary goal helping people like you. They sometimes can even provide political support nationally!
This tip means different things for different people. Search your own faith for inspiration and direction. Reflect on who you are. Look to the leaders of your faith community for guidance and support. They have experience in relating to many people with chronic diseases and in offering helpful consolation.
Also, consider looking into what opportunities might exist within your local faith community for group support. Sometimes, these activities can open the doors to completely new ways to look at yourself and your situation.
Forgetting (not denying)
Learn all you feel you need to know about your condition. Hear what your health care professionals are saying. Become familiar with your medication requirements, the monitoring needs of your illness and medications, and warning signs of problems. Then, take regular time away from your illness and emphasize the capabilities that you do have.
Eating a balanced diet and taking time to relax can rejuvenate you. Do something special (or a number of somethings) regularly for yourself. This might be exercising, yoga, reading, helping at a community group, or even watching leaves fall from a tree. Reserve time for yourself and use it. You will be in optimal condition to face the challenges of your illness if you've refreshed yourself.
Developing a positive attitude does help. Again, a positive attitude does not mean denying that you have a chronic illness. It means not focusing on the negative aspects of your illness all of the time and learning to minimize emphasizing the bothersome features of your disease.
If coping remains too difficult, let your doctor know your feelings. There may be many options that are available to you that you can access through the assistance of your doctor.
Klippel, J.H., et al. Primer on the Rheumatic Diseases. New York: Springer, 2008.