How do you learn who your real friends are? Get lupus.
This is what one woman says in response to a powerful post from WebMD Lupus Community expert Christine Miserandino. Christine describes how having lupus sometimes makes her feel like a child again, even at the age of 33. She often heads home to get help from her parents when she’s going through a rough spell. And she's learned to be honest with family and close friends when fatigue and brain fog get in the way of commitments.
Keeping loved ones in the loop can be hard. But not talking about what’s going on can make matters worse, Christine says. The people who really care about you might worry or jump to conclusions if kept in the dark. On the opposite side, there are those who don’t want to hear about your disease, she says. At this point, a chorus of voices quickly join in, describing friends who’ve vanished because they can no longer be counted on to hang out in the sun or go out for a drink.
“Broom ‘em!” recommends one woman. She's surrounded herself with a circle of supportive people who will make plans for things she can do, but not get angry when she has to cancel.
Another woman worries about the stress on her husband as a result of her lupus. She describes lupus as “an intruder”, getting in the way of the treasured couple time that they had once looked forward to when their children got older.
Several people shared that they had to let go of certain family members, those who couldn’t or wouldn’t understand their lupus. One woman is desperately trying to talk to her mother about her condition, but is constantly met with denial.
For people that you really care about, who are struggling with the information you give them about lupus, Miserandino suggests providing them accredited reading materials on the subject, or even taking them along to a doctor’s appointment so they can hear the facts from a professional.
How have you been able to cope with lupus and maintain -- or re-evaluate -- important relationships with others?