Coping with a chronic illness presents an enormous challenge. The key to coping with any chronic illness consists of first acknowledging the illness, and then adjusting to its limitations.
A patient with diabetes, cancer, multiple sclerosis, allergies, high blood pressure, or any other condition that does not resolve by itself has to make adjustments. Some illnesses require constant accommodation, while others may require fewer changes. For example, for those with high blood pressure, medication and a modification of daily habits may be the only adjustments the patient has to make. Lyme disease, unfortunately, does not fall into that category. Patients with chronic Lyme must make profound changes in every aspect of their lives.
The key to coping with any chronic illness consists of first acknowledging the illness, and then adjusting to its limitations. Acknowledging the illness must be the first step. If you cannot accept that you are ill, making the necessary practical adjustments will be impossible.
Acceptance of a long-term illness means that your new life is going to be quite different from your former life, which is a scary thought for most individuals. In this new reality all the rules are different. Fortunately, you can benefit from the wisdom and experience of many patients who have gone before you. These are some of the successful coping techniques patients have developed.
Minimize Physical Stress
When you have chronic Lyme, your body is not the same safe haven it used to be. Physical strain, which for someone who is severely ill can consist of moderate or even mild exercise, can set off a chain reaction that may leave you ill for days. If you have joint pain and/or muscle pain, and are not severely ill, you may want to avoid all forms of aerobic exercise and limit yourself to stretching, walking, and gentle swimming until you are well on the road to recovery.
The first step toward relieving physical stress is to avoid it.
- Avoid extremes of temperature – many people with Lyme disease find that their symptoms worsen during hot weather. This may be because heat speeds up metabolism. If you are already suffering from the effects of an upregulated immune system, heat will only make you feel worse. Other people notice the reverse – that they feel worse during the cold winter months. Cold requires your thyroid to work harder to maintain normal body functions. If your endocrine system has been affected by Lyme disease, cold weather will contribute to fatigue, slowed cognitive function, and other signs of a slowed metabolism. Try to limit your exposure to both hot and cold temperatures.
- Maintain a regular meal schedule – your digestive system prepares for processing what you eat well in advance of your meals. By keeping to a routine, you will maximize your body’s ability to digest food. Good nutrition is essential for recovery from any illness. (See the section on Diet for food tips tailored to Lyme disease patients.)
- Maintain a regular sleep schedule – maintaining a sleep schedule is problematic for those with insomnia, especially for people who have difficulty falling asleep. You may turn the lights off at 9 PM, but sleep may not come until hours later. It will help if you don’t do anything stimulating for several hours before bed. Avoid TV and looking at screens for two hours before bed. (The light fluctuations are stimulating.) Try to avoid late evening phone conversations. Making your sleep routine pleasant – listening to relaxing music, or reading a light, entertaining novel – will send a signal to your body that it is time to wind down.
It is not particularly important when or how you perform your routines. The idea is to develop a regular and predictable pattern that helps structure your day and minimizes your body’s need to adjust to change.
Minimize Psychological & Emotional Stress
Stress exacerbates all illnesses. The reason stress has such far-reaching effects is that its mechanisms are complex, diffuse, and involve nearly every system in the body. Stress affects the vascular system, digestive system, endocrine system, central nervous system, and most metabolic processes. It also affects the immune system in ways that are sometimes subtle and contradictory, but which, nevertheless, have profound consequences.
A person who must endure the constant stress of a demanding job or active social life while ill with Lyme disease may find it difficult to recover. This does not prevent people from “carrying on,” or at least attempting to, even while ill. Letting go of obligations, responsibilities, and activities that have provided the framework for a productive life is a bitter pill to swallow. But those who are ill have no choice; spirochetes rarely accommodate a patient’s former lifestyle.
The many negative consequences of stressful situations make managing stress one of the most important coping techniques that a chronically ill patient can make. Stress, unfortunately, is an unavoidable fact of life. Whether it’s losing a job or a loved one, moving to a new home, being injured, having a baby, or becoming ill, everyone experiences stress during the normal course of a lifetime. It is difficult to plan for such life events, let alone avert them. However, numerous other stressful situations are predictable and can be effectively controlled. Two important stress-reduction strategies involve avoidance and reduction. Very ill patients should concentrate on avoiding as much stress as possible; those who are moderately to mildly ill, and who cannot escape stress because of continuing work or family obligations, should concentrate on methods to reduce the effects of stress.
Set priorities. You may have done everything that needed to be done in short order before you got sick. Now you will have to set priorities. Which things absolutely must be done? Those are the things you should think about. Your first priority, of course, is getting well. Everything else takes second place.
Just say no. When people call you on the telephone to participate in surveys, organize block parties, contribute to clothing drives, donate to worthy causes, subscribe to newspapers, or anything that contributes to your overall load, you need to let them know that you are not available. You can refuse politely. If it is something important, tell them you will participate when you feel better. If it is a telemarketer calling, request that your name be removed from their calling list. (You may have to repeat yourself several times, but, by law, they must comply.) Although it may be difficult, it might also be wise to stop taking calls from annoying or demanding acquaintances. The same holds true for emails.
Establish limits. Make sure close friends and family members know when not to disturb you (nap or rest times). They should also be informed as to what you can and cannot do. Sometimes it is hard for people who used to depend on you to realize that you have limits now. Life will be easier for you, and for them, if you let them know that you cannot lift or carry heavy furniture, go out dancing, or anything else you formerly did, but cannot do now. Be clear; set some rules. You can set these rules without causing too much friction by inviting people to help you with your recovery. By not calling after 7 PM (to allow your body to prepare for sleep), not asking you to do strenuous work, and so on, your friends can help you get necessary rest.
You don’t have to finish what you start. You were probably involved in a number of projects when you became ill. Let them go. Tell yourself that the world will just have to wait for you (it will, believe it or not). You can decide whether these projects merit finishing when you have recovered. Meanwhile, have somebody pack up your work and store it away.
Procrastinate. Most tasks can be delayed for when you are better equipped to handle them. If you can’t delay, then only do the most important task.
Ask for help. For self-reliant individuals, asking for help feels like an admission of weakness. However, this is no time for bravado. Ask your friends and family to help you. Pass on as many chores to them as you can. Friends can make appointments for you and then drive you where you need to go, pay your bills (you just need to sign the checks, or better still, set up online payment), clean your house, make your bed, take care of your children, cook, fend off telemarketers, and perform the numerous daily chores that can be a constant drain on you. If friends are not available, many churches have volunteers whose mission is to help shut-ins. Do only what you actually can do, not what you think you can do.
Screen phone calls. Answering machines and services were invented to record messages when you are out. For people with chronic Lyme, they are most useful for recording messages when you are in. If the call is important, you can pick up the phone. If not, you will deal with it later. (Being “on call” 24 hours a day doesn’t do anybody any good.) It also helps to turn down the volume of your ringer on your home phone. (You may wish to turn it off entirely in your bedroom.)
Be selective about television programs. Television can be either a detriment to your health or a godsend, depending on how you use it. Stressful news programs, dramas about serial killers, tense thrillers, frenetic commercials, and the general rapid pace and constant flickering can produce a great deal of tension in anyone who is ill. In general, it may be of greater benefit to watch DVDs; light comedies, mysteries, nature programs, old movies, anything that will help distract your mind without taxing it.
You don’t have to defend yourself. Keep in mind that when people ask, “Aren’t you better yet?” it isn’t an indictment. People say foolish things all the time without meaning any harm. To spare your feelings, and theirs, keep your conversations about your illness to a minimum, reserving them for those who really care, and who understand what you are going through.
Reducing the After-Effects of Stress
Many stressful situations cannot be avoided, such as the death of a family member, loss of a job or spouse, and accidents. But even comparatively minor stresses such as an unavoidable family visit or a medical appointment are guaranteed to produce symptoms in people who are ill. If avoiding the situation is simply not possible, learning how to deal with the cascade effects that a stress reaction produces will help to stabilize your system before long-term consequences set in.
If you are mildly ill, walk. One of the best ways to rid the body of excess adrenaline is to walk. If you are severely ill and cannot walk, deep breathing will help calm the sympathetic nervous system.
Practice stress reduction exercises. Stress reduction exercises are invaluable to reduce the amount of stress you feel, calm adrenal responses, gain perspective, and give yourself a break from pressures and demands. Meditation, hypnosis, biofeedback, deep breathing, relaxation tapes, and yoga are all excellent methods for reducing stress. Remember, the mind-body connection goes two ways. When the body begins to churn out anxiety-producing hormones, the mind can limit the extent of its arousal. Many patients with Lyme have observed that even during severe illness and relapses, stress reduction techniques are helpful for maintaining a sense of calm.
Take a bath. Warm water helps chelate stress hormones from the body. (Make sure the water isn’t too hot.) You can add some relaxing essential oils, such as lavender, to help soothe your body.
Take a break. The first thing to remember when confronting any stressful situation is that the natural tendency is to rise to the occasion. Try not to give in entirely to the impulse and plan rest time. Lie down whenever you have a chance, and try to take your mind off situations that can easily become all-encompassing. Reducing stimulation also helps: turn off the television or radio, tell your children to play outside, switch off the lights, and unplug the phone.
Find distractions. Mental distraction is important and should be pursued when outside demands become overwhelming. Mystery or romance novels, soap operas, knitting, watching fish swim in a tank… in short, anything that puts the focus on something that requires no effort helps turn off the stress response.
Express yourself. A tried and true way to deal with stressful situations is to share your thoughts and feelings with someone who completely understands how difficult it is to handle obligations while coping with a chronic illness. A sympathetic ear can help alleviate some of the endless mental rehashing that accompanies decision-making under stress. If another person is not available, keeping a journal and/or writing a blog can be valuable forms of self-expression.
Support groups can be real lifesavers for people going through a long, difficult illness. Nothing validates how you are feeling, and what you have gone through, more than hearing it expressed by someone else. Sharing treatment experiences and successful coping strategies, as well as frustrations, may be one of the most helpful things you can do. (Please see our database of support groups.)
If you are housebound and no one is close by, the internet can provide access to the world. Online forums and support groups give you access to people from all over the globe, providing a wealth of experience that you can draw upon.
The following are some well-trafficked Lyme disease forums:
- The Lyme Network
- Health Boards
- Tired of Lyme
- Healing Well
- CanLyme – Canadian Lyme Disease Foundation
Tired of Lyme is a great website for getting answers to any question you might have about Lyme disease. The site features some wonderful articles about the psychological impact of Lyme disease, and well as how to handle loss, impatience, and dissociation.
Chrousos, George P, and Gold, Philip W. “The Concepts of Stress and Stress System Disorders.” Journal of the American Medical Association 267:1244-1252, 1992.
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