Lupus and the Importance of Support

by Karyn Moran Holton

When one is faced with an illness like lupus, having a support system to lean on is as important as having physicians, medications and treatments to rely on. Lupus is not only physically draining, it's emotionally draining. It's difficult enough to have to experience the fatigue, rashes, pain, and other assorted symptoms of it, but when you have to constantly explain lupus to people ("Yes, it's a 'real' disease." "No, there's no cure." "Yes, you can die from it." "No, I'm not 'all better' yet!"), it can be severely draining to your spirit.

This is where the importance of a support system lies. A lupus patient needs to have at least one person who is unquestionably "there" for him or her, 24 hours a day, 7 days a week, for whatever reason. When you're faced with a disease that lulls you into a false sense of security ("I haven't had a flare in a year!") only to slam you, literally overnight, with symptoms so bad that you can't get out of bed, and the touch of sheets on your body drives you tears, you never know when you'll need that unconditional support!

Humans are basically social creatures. We reach out to one another in good times, to share our joys and hopes, and in bad times, to get support and help. The fact that you are reading this article is indicative of a desire to learn more, to reach out to others, to share, and perhaps to help.

The majority of lupus patients are young and female. For most of us, being female predisposes us to being the "supporters", not the "supportees". We just don't tend to seek out the kind of help that we need because we either think that we're strong enough to handle it, or we don't want to "bother" anyone. Being young can predispose others to think that we don't need help because the common thought is "Young=Strong" and support is something only older people need. Both of these myths can hinder and hurt a lupus patient's health.

Additionally, being young causes most of our closest support systems to be our families--Our parents and husbands, and in some cases, our children. It can be extremely difficult to get the ones we love so much to understand how we're feeling.

Parents of lupus patients frequently go into denial about their children's illness. It's difficult for them to accept the fact that their once lively and energetic child has such a draining disease. Additionally, when the question "Is lupus genetic?" comes up, parents may feel an unwarranted sense of guilt if they or someone else in their family has lupus, or symptoms of lupus. However, parents are usually the first ones that are there for their child in need, no matter how they may be dealing with their own feelings. There really is nothing like a parent's unconditional love for a child, and the lupus patient should realize that parents can be a wonderful fount of love and support!

Husbands and boyfriends (I include "wives and girlfriends" with these terms--It's just that the majority of lupus patients are female--Apologies to the males reading this!) of lupus patients can also have a difficult time with understanding lupus and its effects on the person they care about. Day-to-day support is essential to the lupus patient, due to the unpredictable nature of the wolf. It can incapacitate the sufferer literally overnight, with little or no warning. The spouse or significant other also has to deal with feelings of guilt sometimes: "Is she having a flare because we went out too late last week?" "Is she sick because I don't do enough of the housework?" "Is the lupus affecting the way I see her?" These can be tough issues to deal with!

The major thing to remember when dealing with relationships with significant others is communication. It's fine to feel any emotion--It's how we deal with those emotions, and how they are perceived by our loved ones that makes a difference. For example, if a lupus patient is weaning off a round of steroids, it can make her tired, irritable, and subject to bouts of pain. These things can (understandably!) cause her to withdraw into herself, without much time or energy to devote to her significant other. Without communication, he may feel that she is ignoring him, or that his efforts to make her feel better are unappreciated which can, in turn, make him withdraw from her. This ugly cycle can only be broken with much love, patience, and most of all communication!

Children can be a wonderful source of support for the lupus patient. They don't even have to be yours! If you don't have children of your own, or friends or relatives with young children, I recommend volunteering at your local library or elementary school, even if it's just to read to children once a month. Children have an inexhaustible supply of energy, good nature, and joie de vivre that can lift one's spirit, and refresh one's soul! Spending some time with children can be an enlightening, and healing experience!

Of course, no article on support would be complete without mentioning the hundreds of professional, semi-professional, and just-plain-folks support groups available to lupus patient today. The LFA has many local chapters available to patients, and families, and there are many mailing lists, and other online support groups that can be accessed by lupus patients who are unable to leave their homes to attend meetings. There is no one who can understand lupus suffering like someone who's been there! Additionally, venting one's problems to someone who is likely to need your supportive shoulder in the future, can assuage any feelings of "I don't want to bother anyone with this" syndrome! Take advantage of these programs if you can. The simple feeling of realizing that you're not alone can be overwhelmingly supportive, and by helping others in their struggle with the wolf, we often find that we are really helping ourselves.

© 1999 Karyn Moran Holton

Karyn Moran Holton is a nurse who has been diagnosed with lupus for the past 3 years, and has spent most of that time trying to raise awareness about lupus and other under-appreciated autoimmune diseases.