The Importance of Support
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!
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