Lupus Canada Advokit

If You Have Lupus

Your best tool as a person with lupus is to educate yourself about your disease and be able to educate the people around you. You will benefit from learning as much as you can about lupus, and specifically about your lupus - which may present itself differently from another person's condition.

Lupus is known as 'the disease of a thousand faces' - there are several different ways that the disease can affect you. For example, at some point during the course of lupus, up to 50% of persons describe feelings of confusion, fatigue, memory impairment and difficulty expressing their thoughts. You may also suffer from mood swings, irritability, extreme emotional or mental fatigue - even without any obvious flare-up symptoms.

It is important that you get to know how you experience your lupus so that you can explain it to people. This is particularly important as many of the symptoms of lupus are invisible and you may 'look just fine' to other people and be in a flare.

When first diagnosed or when you are flaring, you may not be well enough to understand all that is happening. To allow you to collect your thoughts and questions, you might want to ask your doctor for a special appointment to discuss your condition in detail. In the meantime, it can be a good idea to write down any questions or symptoms you want to talk about, because it is easy to forget them.

If you find you cannot cope alone, ask a family member or close friend (an advocate) to come with you - to the hospital or the doctor's office - to hear what is being said and to help explain what is happening to you. (Your advocate is there to listen, and to speak out when you cannot - not to take over the meeting.)

If you want more information than your physician provides, there are good books, articles and pamphlets written on the subject and your local association can provide suggestions. The more you know, the better you can cope.

Seek out the information you need from as many reliable sources as you can. The word "reliable" is important here. Not everything in print or on the Internet is true, so make sure you check the source or the information with your doctor or your lupus association.

Don't be afraid to speak about lupus, or to meet other persons with lupus. You will soon realize you are not alone.

A visit with your local association can be arranged, if this would be helpful. Speaking with someone who has been through what you are experiencing can sometimes relieve a lot of tension and ease your fears.

In addition to the resources listed in this kit and ones you can obtain from your lupus association, there is another, important, type of information that many have found helpful. This source of information (and encouragement) is the first-hand experience of people living with lupus. Your local lupus association can help you find (or even create) a self-help group, or put you in touch with someone to talk with.

Gathering and sharing what you learn will help you and those around you to understand how lupus can affect your life, why you feel the way you do, what is happening to you, what treatments are available, what to expect, how symptoms can affect you and how best to deal with them.

Your Doctor

Your first and best resource should be your doctor. Ideally, you need a physician you can trust, one who is willing to listen and prepared to spend the time needed to answer your questions clearly and respectfully.

It is important that you be able to communicate with your doctor. A good doctor is your partner in dealing with lupus, ready to refer a difficult problem to a specialist, and not uncomfortable if you ask for a specialist or a second opinion.

If your doctor considers you a partner in your care and informs you fully about any treatment or medication prescribed, it will help you to follow directions and note any unusual reactions.

You can make it easier for your doctor if you do your part. Keep a diary or journal of your illness. Make notes about symptoms right away, as they come up. If you find a way to cope with or to lessen a symptom, write that down too. Record any medication reactions, blood tests, and other ongoing evaluations.

The diary can help your doctor in considering medications, treatments and referrals. It can also help you prepare questions to ask and issues to bring up at your next medical appointment.

You can improve communication with your doctor by arriving on time, with specific questions, and the willingness to answer the doctor's questions honestly.

Don't try to diagnose yourself, but do explain what has happened since your last visit. The doctor can't be expected to read your mind about your condition.

If you disagree with your doctor about a course of treatment, you (or your advocate) should make your concerns known and discuss the situation.

There are also a number of other health professionals who may be helpful to you - for example: occupational therapists, physiotherapists, social workers or massage therapists. Your doctor can discuss these alternatives with you and provide you with a referral if needed.

Your Medications

For each medication prescribed you need to know: possible side effects, interactions with food and with sunlight, how long it takes to work, how to take it and when, and how long you can expect to be on it.

In addition to your doctor, your pharmacist is qualified to give you information about your prescriptions. If you can, establish a connection with one pharmacist, who will keep track of what you are taking and tell you of possible interactions when something new is prescribed.

If you are seeing more than one doctor, be sure all of them know the medications you are taking - and don't feel awkward about reminding them. Doctors know they can forget some of the details, and you are the one most affected by the medications and treatments. Again, diary entries will help you keep track of any reactions or side effects.

Hospitalization

If you're admitted to the hospital, be sure that all the doctors who have been treating you know about your hospitalization. Very often, a person with lupus is being seen by several specialists. They should all be aware of any changes.

Many hospitals have Patient Advocates, to help patients who have a problem with a health professional, treatments or the surroundings. If you have any difficulties while in the hospital ask to speak to a Patient Advocate. To a person with lupus who is ill, such help can be invaluable.

Your Family

It isn't just you as the person with lupus who suffers with this chronic illness. Family, friends and co-workers are all touched by it in some way.

Experience has shown that all family members should be told what is happening to the person with lupus. The specific details will, of course, depend on the age of the persons involved.

Family and close friends are often your first line of support. It is important that they understand what is happening to you, and what you need from them.

If you and the people close to you can be knowledgeable about this illness and talk openly about your limitations and your needs, it will help all of you weather the 'flares' more smoothly.