Q: Although I’ve been sick for a long time, I’ve just been diagnosed with lupus. I am very relieved to finally know what’s wrong with me. My biggest fear is that no one will want to be with me because of my disease.
A: Receiving a diagnosis of lupus can certainly result in mixed emotions. Many lupus patients respond with tremendous relief to the identification of their condition ad a real and specific illness with a name and a course of treatment. The frustration of searching and not knowing is now behind you. Yet you are also faced with the reality that you really do have a disease with a name which can be a shock even if you suspected it deep down inside. Remember that having the name “lupus” for your condition does not make your condition worse or better. You will, however, be confronting new challenges in the course of your treatment including lifestyle adjustments and the development of new coping tools. The person you develop a relationship with will obviously need to be someone who understands your lupus situation—that your health and emotions are likely to fluctuate and that you may be required to undergo treatment at various times. Your partner will also need to understand that your priority is taking care of your health first and foremost so that you can be a better and more available partner (friend, worker and person). People with lupus need partners who are open minded, accepting and sensitive. These are usually people with some life experience of their own who understand that life is full of ups and downs and is never perfect. Most likely this is the kind of person you want to be with anyway.
Q: How can I deal with family members and other people who don’t believe I’m sick because I look well?
A: The first step is to share your lupus diagnosis including your symptoms and your course of treatment along with written information such as books and pamphlets. In the case of close family members, you may wish to have them accompany you to a doctor’s appointment. If your family members or others still don’t believe you, they may be in “denial”. In other words, they may be having trouble facing the reality that you are sick because it is too upsetting for them. A temporary period of denial is normal for both patients and families, particularly in a disease like lupus, which often doesn’t show. Hopefully they will be able to accept your illness situation in time. If the denial continues you may wish to explain that although you understand their difficulty accepting that you are sick, as a person with lupus, you need their acceptance, understanding and support in order to help you cope.
Q: My children are in 4th, 6th and 8th grades. They are old enough now to understand that mommy doesn’t feel well. How do I explain to them what lupus is but at the same time not scare them? My older one is starting to act up when I’m not feeling well. Is there something my husband and I can do to stop this from happening?
A: In answer to your first question, I suggest that you keep your explanations simple, keeping in mind your kids’ ages, language and capacity to understand. Be honest but choose your words carefully. Explain that lupus is an illness that doesn’t go away but which comes and goes so that some days are better than others. Lupus can affect various parts of your body but isn’t always noticeable to other people. Explain that lupus often makes you feel very tired. Be sure to fess up and tell your kids that having lupus makes you sad and frustrated at times because you want to be the kind of mom who can be everything but you can’t because lupus makes it hard for you to do certain things. Be sure to convey that they had nothing to do with your getting lupus and that lupus is not contagious.
Remind your kids often that you love them. Promise them that you will take care of yourself by taking your medicine, resting and staying out of the sun so that you can be the best and healthiest mom possible. Tell your kids that you are always available to talk with them about whatever is going on in their lives as well as their feelings about your lupus.
The most important thing is that you TALK with your kids. Have family meetings regularly. At these meetings, encourage your kids to express their feelings, concerns and fears. You and your husband should address their questions and provide reassurance. Together the family can make decisions about how to pull together to solve problems.
Your second question is difficult to answer without knowing the specific circumstances of your adolescent’s “acting up” behavior. Most often, angry and rebellious behavior occurs when a child or teenager feels a loss of control, insecure or frightened, which is common when a parent is ill. In other cases, acting out can reflect a need for attention. All of the suggestions I have mentioned above apply to your teen as well as to your youngsters. Start by spending more time listening to your adolescent—exploring and addressing his or her needs, feelings, fears and frustrations (rather than giving advice or reprimands). If trouble continues, consider professional help.
Q: Only my family and close friends know I have lupus. For the most part they are really supportive. However, sometimes it appears as though they forget that I have it. Right now I am in a major flare and some of my friends just don’t get that I can’t stay out late or be active. I don’t want to have to keep saying I don’t feel well, is there anything I can do to help them understand?
A: Even supportive family and friends will occasionally “forget” that you have lupus, particularly if you cope well most of the time. At times they may have trouble facing the reality that you are sick because it is too upsetting for them. Temporary periods of denial are normal for friends and families, particularly in a disease like lupus, which often doesn’t show. It can be very difficult to find a balance when people ask you how you are. If you say that you’re “OK”, they may expect you to function normally and you may wind up feeling misunderstood and resentful. If you confess the truth—that you feel terrible, you may end up felling or sounding like a complainer. It can be difficult to remain positive when you feel bad. I suggest that you have a couple of standard responses ready for those bad days, which convey your physical and emotional struggles in an honest yet positive way. Here are a few ideas:
• “Today’s a tough day, but I’m hanging in.”
• “All I can say is: Thank Goodness this disease fluctuates. Tomorrow will probably be better.”
• “I’m sure grateful for my medications because today I really need them!”
In other words, be genuine but be positive. There’s no need to conceal your distress and no need to dramatize it. I hope this approach helps.
Q: I’m a 29 year old female and I’ve been dating a man for 3 months. We are becoming very close but I haven’t told him about my lupus yet. I’ve had flares but I’ve told him I had the flu or headaches. I really like this guy and I feel it’s time to share my situation but I’m afraid of being rejected. Any suggestions?
A: Deciding when and with whom to share your lupus is a personal decision. It sounds like you’ve reached a point in your relationship where the stress of keeping lupus a secret is no longer tolerable. Because you are feeling close to your new boyfriend, you want to reveal all of who you are, including your lupus. In your case there are good reasons for doing so. If he is going to become involved with you on a long-term basis, he has the right to decide for himself whether he can handle the ups and downs of your illness situation. If you are going to be involved with him, you need to know that he is the kind of man who can be there for you. Clearly you want to be with someone who is non-judgmental, sensitive and caring. Be sure to present the information calmly and in a way that demonstrates your own self-acceptance and an acceptance of your lupus. You can’t expect others to be comfortable with you if you are not comfortable with yourself. Remember that he is human and will not be able to respond perfectly. Your boyfriend cannot be expected to be happy that you have a chronic illness. Give him time to assimilate the information and to think about it. Be prepared to answer any questions he might have or to provide reading materials. Use a support group or a friend to rehearse your revelation and to practice responding to possible questions.
Don’t take a negative response personally. It suggests his discomfort with illness, not with you. Telling your boyfriend about your lupus is a risk and you need to be realistic. There is no guarantee that he will be able to handle it. But one thing is for certain. If he can’t accept your lupus, he may not be the man for you.