Don’t Say That
Some very well intentioned family members and friends of Lupus patients can do and say things that can frustrate and hurt the patient. Here are a few examples:
“Lupus, my cousin has that, it’s not that bad.” – Lupus is very different from person to person and can even change drastically in the same person.
“Feeling pretty good today?” – This can make us feel like we are disappointing you if the answer is no.
“You look like you feel pretty good” – Looks can be deceiving.
“How do you feel?” – It’s not that you should never ask this, we just get it ALL the time, sometimes we just want to be a “normal” person that is not focused on Lupus 24/7.
“It must be nice to not have to work.” – We would not only gladly exchange our illness for work, but those of us who have been disabled by it, miss working and contributing in that way.
“You just want attention” – We certainly don’t want attention for this. A lot of times we get embarrassed by the focus and attention for something not only negative, but something we have no control over.
“You never want to go anywhere or do anything” – Believe us, we wish we could a lot more than you do! Please understand that we just aren’t always capable.
“I heard (…) cures Lupus” – It doesn’t matter how you fill in the blank, just don’t say it. Everybody and their brother has some “miracle cure” Number one we have tried it all already, and number two if it really cured Lupus it wouldn’t be a secret, we would know about it already!
“All you need is…” – More sleep, this vitamin, more exercise, etc. It doesn’t matter how you finish the sentence, just don’t say it. People are constantly offering us unsolicited medical advice. Unless you have a medical degree, we will stick to our doctors’ advice, that is enough to deal with!
Complaining about trivial things – Please use our experiences to learn to value the important things in life! Complaining about stupid, meaningless things can feel like a slap in the face.
Talk only about Lupus – While we do need to talk about it sometimes, we get real sick of it real quick. Sometimes we just want to do something fun and silly and try to forget we are sick for a while.
My adds are:
“Oh, yeah, right, you cannot help me” This implies that we are lazy or incompetent and do not want to be of assistance. In fact, the opposite is true. We were more than helpful when able, and if not able, we need respect as a person with feelings. Do not belittle me.
“You look like you have put on a few pounds” This is one that I get from time to time, more in my past. This implies that I am out of control eating and doingthis to myself. In fact, I take oral and IV steroids that cause me to balloon up each and every time and pointing out the obvious only makes my self esteem hurt. I know I have gained weight and I want to get it off, but I am sick and need these (poisons) meds to survive. Please think before you speak.
The best advice is to follow the patient’s lead. They will communicate what they need and hopefully understand that you are just trying to help even when you say the wrong thing.