A man about to pop speech bubble balloons filled with unsolicited advice about lupus

Unsolicited Advice for Lupus

Living with a diagnosis is one thing. Getting unsolicited feedback from coworkers, acquaintances, friends, and family members is another. It seems like everyone has something to say, and a lot of it is far from helpful.

To hear more about what comments and questions you field most often, we reached out on the Lupus.net Facebook page and wrote: “We all receive unsolicited advice and questions about lupus. What is something you've been told when you mention you are living with lupus?”

More than 100 of you shared. Here is what you said.

“But you do not look sick.”

Lupus is not a disease that is visibly obvious. Sometimes the reddish butterfly rash is present on the face — but only some of the time, and typically before a flare. All of the other ways that lupus presents, from fever and joint pain to headaches and memory loss, are not things that are visible, making this disease hard for people to see just by looking at you. But, other people do not need to ‘see’ your lupus. Rather, the world would be a little easier and gentler if more people just accepted others at their word and showed more empathy in general.

“You look too pretty to be sick.”

“‘But you do not look sick’ is usually what I get also. They cannot see fatigue and lack of strength and energy. You have to force yourself to get moving every day. Hang in there and take care of yourself!”

“My biggest pet peeve is when I am picking up scripts from my OLD pharmacy (switched back to my hometown pharmacy) and they ask me 20 questions about why I need so many medications and pain meds. Then they make comments like, ‘Well, you do not look sick’ and made me feel so uncomfortable about everything.”

“Have you tried exercising?”

Why is it that so many people think they are experts on lupus, especially if they know one person who has it? What they do not know or acknowledge is that lupus affects everyone differently. Moreover, they know nothing about your experiences with lupus. Nor do they know what your lifestyle looked like before lupus or what it looks like now. One possible way to handle unsolicited advice is to tell someone, “I do not need any advice, thanks” or “My doctor is overseeing the treatment for my lupus.” A simple, “Please stop,” works well also.

“You need to exercise and eat healthy! Well, guess what? I did! I did it all: I was an active, attractive young woman who believed in clean eating before it was trendy. I can just cringe.”

“Have you tried going gluten-free? Or cutting out sugar? Or doing yoga and using essential oils?”

“Have you tried exercising? It will surely help. You should go vegan. That will help.”

“You need to cut out white sugar, white flour, and gluten. Go keto. Sleep less. Sleep more. Exercise more. Exercise less. Essential oils will help. Drink red wine, oh and....”

“You are faking.”

It is sad that people are quick to judge someone else’s disease and how it affects them, rather than asking questions to learn more about what lupus actually is and what a day is like for you to live with lupus. For some reason, people think that if they cannot see your lupus, then it must not be real. If only it were not real!

“Every other day it seems I hurt and try to get up. I think my love ones do not believe it can be this bad and that the struggle is real.

“You do not need a handicap spot — you are faking. You do not look sick at all.”

“My friend has lupus and her own family members call her a hypochondriac. It breaks my heart.”

“Do you die from it?”

Many of you shared that people are asking you questions — and what they are most curious about is how deadly lupus is. Yes, people tend to be morbid. The good news for those with lupus is that 80 to 90 percent of people living with it will likely live a normal life span. Of course, these questions can be awkward, depending on the tone and time asked. Granted, many people may be curious and want to know more, as lupus is not a diagnosis that gets a big spotlight. If you are up for it, consider it community service to help educate those who ask.

“Do you die from it? What is that?”

“Omg, are you going to die?”

“Oh my gosh, I am so sorry. But what is it?”

To everyone in the lupus community who answered, we appreciate you opening up and sharing your experiences with us. Thank you.

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