One of the obstacles we who have lupus have to overcome is doubt. Not only self-doubt, such as: Do I really have lupus? Will I never get better? How am I supposed to raise my family when I'm so tired? but also family and friends who doubt the validity of our claims that we are, indeed, sick.
"But you don't look sick" is a phrase we hear many times. No doubt meant to cheer us up, instead it sets us up for more doubts. The person I'm married to doesn't believe me; my friend thinks I'm pretending to have this disease; my kids don't understand why I can't sit in the bleachers for their baseball games....and on and on.
So, if you are a friend or relative or a loved one of a lupie, let me set out some suggestions:
1. Hard as it is, accept the diagnosis. Or the non-diagnosis, as the case may be. Many times, we who do have this illness don't have a "real" diagnosis from a doctor. Just a vague, mixed-connective tissue disorder, or fibromyalgia, or chronic fatigue syndrome, and on and on with non-specific words written in a chart, and the patient is left believing she is imagining things. Being a hypochondriac. Wanting to get out of hard work either at the office or at home. Looking for sympathy. I will tell you that the last, looking for sympathy, is almost correct, but I'd change the word to "empathy."
Think about the last time you had the flu. You ached all over. Your body screamed at you every time you moved. You could hardly get out of bed, let alone dress and go to the office. This is similar to what a lupie feels every day. Really. Hurting, fatigued even after sleeping all night, your loved one claims she can hardly get around the house without hurting, or her fatigue level is such that it takes every effort she has just to get out of bed. Believe her. She really doesn't want to feel this way. But she does.
2. Pull up the slack a bit, if you can. If the house is cluttered with the kids toys, either pick them up yourself or get the kids to do it. I know, I know, you're the man of the house, and it's not your job to pick up toys, or wash the dishes, or put a load of clothes in the washer. Your wife would do them if she only could, and it hurts her to ask for help, or when she tries to do it herself, she hurts even more. So ask what you can do to help.
3. Don't try to "fix" a lupie. We have heard every "cure" imaginable, and some that might actually harm us if we tried them. I had a very good friend who was determined that I should get better, so she dropped off a huge bag full of echinacea, "to boost your immune system." I had to tell her, "I can't have my immune system boosted; that's what's the problem. I have too much of an immune system." Please don't tell us of a marvelous new juice you found on a health product site, and it's guaranteed to "cure" lupus. There is no cure. Only treatment.
4. Along that line, please don't "guilt" us by telling us, "If you hadn't smoked; if you had only not used sugar substitutes like sacharin; if you hadn't stressed out so much over your divorce" you wouldn't be sick now. That doesn't help us either. Would you say the same things to a person who has cancer? No? Well, then why say it to us?
5. Forgive us if we feel good enough one day to plan for an event with you three weeks away, and when the time comes, we are flat on our backs with another lupus flare and we can't go. We can't always rely on good days. We are subject to sudden changes in our health in many different ways. And that goes for "normal" people, too, you know. Say you've planned to go to a play or concert and at the last minute, you come down with a nasty cold. Since you don't think you should cough and hack your way during the performance, you choose to stay home. We are the same way. Some days you're the bug, some days you're the windshield.
6. When you ask us how we're doing, accept the answer, no matter what it is. It could be "Fine" or "Not too good today" or "**&&^%$ are you asking me this **&&^^%$ for?" The last answer might be the most honest one, by the way, but the other more vague responses can also be how the lupie is feeling at any given moment.
This is by no means a complete list of suggestions. Think of your own ways you could give aid and comfort to this person who happens to be stricken with a case of "weird-itis." Try to keep a sense of humor about you. Name the enemy, lupus. My name for her is **&&^^%%%##@@, or "that bitch" for short.
Thank you. I feel better, now.