Lupus patients must learn to control their lupus, rather than be controlled or "invaded" by it. I believe that lupus patients can learn to fight back and join with their physician to gain control over their illness.
The twin burdens of lupus
The burden of having to live with lupus is two-fold; on the one hand, there is the physical burden of the illness and its potential seriousness and, on the other hand, there is the intense fear that so often accompanies the illness, even in patients who are doing quite well. Through education, the patient with lupus can learn to fight back on both fronts.
Coping with the illness
Learning to live with lupus is like anything else in life; like becoming a parent, starting a new job, making an investment or buying a car. One has to learn how to do it and this learning does not happen overnight. Life is made up of pleasures and of obligations. Clearly, lupus can be quite an obligation but, depending on the person, the burden of this obligation may be lighter or heavier.
One key to coping with the illness is to get organized. Managing the day to day aspects of your lupus will help you to be in better control. Below is a list of some practical tips that will help you take care of your lupus responsibilities.
- See your doctor regularly and do not postpone your visit because you "feel so well". Make a list of all your questions and bring it to your next appointment.
-Make a list of all your pills or medications to each appointment. This helps your doctor identify "that little yellow pill" that was prescribed by "that other physician". Knowing all your medications, your doctor may be able to cut down on the number you are taking, which is nice and saves money too.
-Buy a multi-compartment pill box in any pharmacy so that you can lay out your pills for each day or week. This makes it easy to check if you have forgotten to take your medications.
-If your doctor orders a urine collection over 24 hours, collect your urine from Sunday to Monday morning and bring it into the hospital on your way to work. Carrying around a jug of urine may be embarassing but do your best not to lose a drop. Important decisions about the management of your disease will be made, in part, based on the results of this collection. (Urine collection should not be done during menstruation.)
-If your blood pressure is checked by your family doctor, the nurse at work or by yourself, don't forget to bring these readings to your next appointment. (Readings done at the Lupus Clinic are often higher and this can cause unnecessary concern.)
-Purchase a thermometer. If you feel that you are running a fever, take your temperature every six hours and wrrite down the results. If the problem continues and is not explained by a cold or the flu, call your physician.
-Be prepared for blood tests to be taken regularly, even when everything seems fine. SLE is unpredictable and the sooner a flare is detected, the better.
The physical burden of lupus
Over the past several years, there has been an extraordinary change in the concept or thinking about lupus. Lupus is no longer seen as a disease of crises but as a chronic illness. Many years ago, when the treatments for lupus were so limited and the death rate so high, lupus was a disease of catastrophes or crises. Patients would often go from one major physical problem to another, losing more and more ground with each flare. The physician's main concern was to get the patient out of crisis, if at all possible. What happened to the patient in-between was thought to be much less important.
With the use of prednisone and because of better knowledge, lupus has become a different illness, often with a two-phase pattern. The first phase is that of the serious illness or the period of increasingly severe symptoms that lead to diagnosis and treatment. In the second phase, the lupus patient is no longer seriously ill but rather chronically ill. In this phase, some patients have long remissions while other patients continue to have bothersome symptoms. The symptoms, though not life-threatening, will interfere with their ability to lead a normal life and will require continuing treatment, often in the form of a low dose of prednisone.
Why is it important that lupus patients be aware of this? Because lupus flares can still happen in this chronic phase and because nowadays patients can help their physician in identifying when a flare is starting. How is this possible? Because lupus is a disease that repeats itself, the symptoms that the disease has caused in the past are often the symptoms that tend to recur.
Today, most lupus flares do not happen overnight. Rather, patients will notice a slow but steady decrease in their well-being, often over a period of several days, weeks or months. Since the major problems of lupus often follow the milder symptoms such as increasing fatigue, pain in the joints, increasing hair loss, etc., the watchful patient will know that something is going on. Nobody knows his/her body better than the patient. It is the patient, not the physician, who will feel if the disease is flaring.
Knowing about lupus is important
It is important for the patient to be educated about the symptoms of lupus in order to identify when flares are beginning. When I have seen a patient for some time after diagnosis and the disease has been brought under control, we talk over their illness and make a list of the symptoms that were experienced at the onset or beginning of SLE. We are usually able to trace those symptoms back to a period several months before the diagnosis was made. Often these are symptoms that the physician cannot see such as increasing fatigue and loss of appetite.
While lupus is a disease that tends to repeat itself, patients may, during the course of their illness, develop new symptoms or warning signs. This makes it important for them to know the most common problems so they can recognize them and know they are important. I have included a list of these symptoms or warning signs at the back of this booklet in Appendix One called "Symptoms which may indicate a Lupus flare".
In the chronic phase of lupus, these symptoms may show up again and signal the start of another flare. The patient who notices these signs can bring them to the attention of the physician who will do a careful examination and order tests to check for other evidence. When caught at this stage, a small increase in the dosage of medication may be all that is necessary. If the physician is uncertain that a flare is occurring, and false alarms are frequent, the physician will want to see the patient more frequently in the weeks to come. At any rate, telling your physician will have made possible the early identification of a possible flare. Action will have been taken and a crisis will have been avoided.
Symptoms that don't go away
Part of the burden of lupus are those symptoms that hang on for several months after a flare is over or seem to never go away. I am thinking, in particular, of chronic fatigue, the lack of drive, the inability to do as much as one could before. These symptoms are frustrating and a major feature of lupus as a chronic illness. After the more severe part of a flare is over, these symptoms are often the hardest to combat.
often tell my patients that it is easier to treat the severe symptoms of lupus than to correct the fatigue or, as I call it, "the last 10 or 20% of well-being that is missing in order for you to feel perfect". This is a hidden disability resulting from the disease. You will have to learn to live with these symptoms and to adjust your activities to a less busy schedule that takes your limitations into account. Changes to medication can be made, such as increasing slightly the dose of prednisone or starting the drug hydroxychloroquine, to try and treat these symptoms. In many cases, the patient just has to learn to live with it.
Things that make you feel good or bad
Another way for lupus patients to lessen the burden of lupus is to look for things or activities that make them feel good. Patients should not feel guilty for doing exercises, eating a favorite food or, by all means, avoiding some activities they don't like. Throughout a lifetime of chronic illness, lupus patients will always find some things that make them feel better and they should feel at ease, not guilty, in indulging. And if, sooner or later, patients find a particular activity makes them feel worse, why not avoid it? Listen to your body.
The burden of fear in lupus
Lupus sufferers will experience the disease for the rest of their lives. It will modify their ability to work, will change their marital and family life, and will also change their social life. It may change the way they look and it will change the way they feel. New and strong emotions will surface and these have to be dealt with. Patients may feel sad, worried, angry and, perhaps, haunted by thoughts of dying even when the disease is under control. The fear of "what will come next", of the dreaded fatigue, of not being able to function, of the side-effects of the therapy, of going into a flare, of death - these are the burdens of the patient with SLE.
I believe that what eases these fears also eases a part of lupus and that is why I feel that patient education is so important. If I was not absolutely convinced of this, I would not have accepted the task of writing this booklet! The fact that you are reading it indicates your willingness to be educated about your illness. Ignorance of lupus generates fear but knowing about lupus generates confidence and will help you cope. So let us look at some of the more common fears experienced by lupus patients.
The fear of failing
The fear of inadequacy is a common trap for the lupus patient. A typical example is the young mother with lupus who is unable to look after her child and her household chores because she feels so tired and worn out. Because she cannot do these things, she feels guilty and inadequate as a wife and mother. Then, the feelings of guilt may become feelings of sadness and depression. If you feel inadequate and guilty, have your spouse read this paragraph and perhaps you could both discuss this with your physician.
Fear and depression
In some patients, these feelings of guilt and depression can become a very heavy burden and the physician may become concerned. Lupus is so complex that, at times, it is not clear if the emotions of the patient are related to the disease or to the treatment or to the normal difficulty in adapting to a serious illness. It could also be a combination of all these things or, perhaps, something completely unrelated. In this setting, I tell my patients that I need the opinion of a psychiatrist to help me sort things out and provide them with the best treatment.
Asking for the advice of a psychiatrist is no different from asking for the opinion of a dermatologist or any other specialist. However, many patients become upset, thinking that they are mentally disturbed. It is an unfortunate product of our society's attitude that while it is acceptable to be extremely sick physically, nothing should ever go wrong with the mind. Remember that, if ever needed, the advice of a psychiatrist can be extremely useful to the lupus patient.
The fear of a flare
Another aspect of the fear burden is the question "Is my disease getting worse? Am I becoming sick again?". Patients naturally look to their physician to answer this question. While their physician can often reassure them, the patient must learn to give the physician time to make a decision or come to a conclusion. Lupus is not a disease of absolute "yes" or "no". I do not hesitate to tell my patients that I need a little bit more time to know in what direction the wind is blowing and the patient must learn to live with this necessity. So give your physician a chance; lupus is a difficult disease to treat and physicians are constantly concerned about either undertreating or overtreating it.
The fear of a crisis
Many patients are afraid that their lupus will suddenly get worse, and this fear can leave them with a feeling of impending disaster. I think that most patients can now be reassured about this as, contrary to the situation of 30 years ago, physicians are better able to keep the disease under control. I believe that with regular follow-up, most patients need not fear becoming unexpectedly and severely ill with lupus.
The fear of death
It is not surprising that lupus patients in the middle of a serious flare or a crisis would think about death. Sometimes these thoughts linger on even after the crisis has passed and patients wonder how close to death they have been. Indeed, having a serious chronic illness (or dealing with it as a close family member or physician) does remind us that some day we will die. The lupus patient may wonder if lupus will make this happen sooner rather than later.
This fear is normal and there is no magic button that will make it go away. Like so many things about lupus, it has to be faced and dealt with. Often, an honest discussion with the physician will help the patient to remember that, even when things seem blackest, there is room for hope. Remember too that the survival rate is now over 90% and that each year the outlook is improving for lupus patients.
The patient's choice
What can patients do to alleviate or ease these fears? Patients should discuss their fears with their physician. Of course, this is easier said than done. No one likes to think or talk about fear or death. Patients are told to have confidence in their doctor. Again, this is easier said than done. However, a good, trusting relationship can develop, provided that the physician and the patient give each other time. I see lupus not only as a "chronic illness" to which the patient must learn to adapt but also as a "chronic doctor" to whom the patient must learn to adapt and vice versa. With time, patients can benefit tremendously by being honest and open with their doctor.
Often, patients hold back from asking a question fearing what the answer might be. In fact, that answer could prove reassuring. Don't keep your questions locked up inside, just ask! By doing this, you will not only be dealing with your fears in a positive, healthy way, but you will also be helping your physician to make decisions about treating your illness. Indeed, one of the major challenges of treating lupus is to separate lupus symptoms that need treatment from symptoms that do not. The physician must be constantly deciding what is dangerous to the patient and what is just troublesome. By asking questions and talking about their fears and concerns, patients can help their physician in making those important decisions.
What else can a patient do?
As you have seen, SLE is a complex disease. It is not always easy for your physician to answer all of your questions. Becoming a member of a support group of lupus patients can be extremely helpful in finding support and additional information, not only for yourself, but for your spouse and family as well. Talk to other patients. You will be amazed and reassured to find other people who have gone through what you are now experiencing. Through public meetings with health care professionals, newsletters, telephone networks and informal gatherings, lupus support groups will help you cope.
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