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What Not to Say to Someone With Lupus

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Lupus warriors know all too well that words can hurt just as much as sticks and stones. A little empathy and sympathy go a long way.

People say the darndest things, and even the most well-intentioned people can say things that can deeply wound people with lupus and other chronic diseases. 1.5 million Americans have lupus according to the Lupus Foundation of America. That means that 1 in 200 people in the US are battling lupus. It’s not that rare, and neither are people saying frustrating things.

It’s understandable why people say these things. It is difficult to have empathy when you do not truly understand how someone with a chronic illness feels, especially one with invisible symptoms like pain, anxiety, fatigue, and depression. Lupus warriors know that this is a part of their battle, and often feel that they need to smile and swallow the harsh feelings that careless words cause, but it hurts all the same.

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“You Don’t Look Sick.”

Also known as “You look fine!”,  “You can’t be that sick. You’re working!”, and many other similar phrases. Even when meant as a “complement,” this is the king of insensitive phrases. It dismisses a person’s experience – especially how they might be struggling to do basic activities – accuses them of lying about their symptoms, and makes people feel insecure about themselves.

Nearly 50% of people with lupus experience some sort of brain or nervous system-related symptom related to their lupus. It’s a challenge that makes everything a little more difficult, and depression and loneliness are also something that many people with lupus struggle with. When people say things like “You don’t look sick,” it really doesn’t help.

This is definitely a “Never Say” and it is worthy of an apology!

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“You Don’t Need Those Meds!”

Also known as “Why are you putting those chemicals in you?” “Pull yourself up by your bootstraps,” and “Suck it up.”

Meds are an important part of treatment for people with lupus, reducing symptoms to a point where many can live a normal life.

In the user ShanThom72’s story, her lupus journey started with the first symptoms of lupus at age 8, and chronic kidney issues at 15 that resulted in a lupus diagnosis. However, once they were diagnosed, they began taking the appropriate meds and made it through college, began a career, married, and had a healthy baby boy. Once the treatment is right, then many things are possible.

While it is true that some people with lupus find relief with alternative therapies like acupuncture or reflexology, these treatments are not right for everyone. For many people with lupus, it took medication to get to the place they needed to be in order for these therapies to work for them at all. 

Fighting lupus is about absorbing advice and information, but also listening to one’s own body and finding what’s right. Medicines are a part of that journey, and can sometimes be hard on a person, but when people dismiss them as “chemicals” or “big pharma,” they dismiss part of a lupus warriors fight and devalue one of their key weapons against lupus.

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“Have you tried X?”

“You should get more exercise” “You should try this diet I heard about!”

People sure like to give out unsolicited advice! Although there are some universal traits of a healthy diet, one’s diet is a very personal thing. They are figuring out what makes them feel good, either on their own or in communication with a doctor. They don’t need someone else butting in with advice they don’t need or may already be following.

People with lupus are sick of people telling them constantly to “eat healthier,” “get more exercise,” or “feel better.” They may be trying to help, but sometimes, it’s all that a lupus warrior can do to get through the day. If someone wants to try a recommendation, that’s up to them. They might have already tried that, too! For example, a  gluten free diets might not be right for them, or they found a restrictive autoimmune protocol diet difficult to keep to consistently. Getting nagged about it won’t make it work.

If they ask for advice, though, that’s a different story. And offering one’s own experiences, instead of recommendations, might be more helpful.

“You Don’t Go Out Anymore.”

This is right next to “Why aren’t you working,” and “Why aren’t you doing an activity you used to love,” and it’s just a step away from “You’re so boring these days!”

Having lupus means you can’t go out and do many activities with your friends. It’s not fun, but it’s also not their fault. We live in a society that wants people to “suck it up and move on.” It’s not right. Yes, as a person with lupus, there are responsibilities that your friend needs to keep up with, but lupus effects almost every organ system, and puts a huge strain on their life.

People with lupus have only so much energy to spare, often explained as “the Spoon theory.” What many healthy people don’t understand is that the little things take effort. Standing up, reaching out, picking out clothes, getting dressed – all of these take more energy and willpower for people with lupus. Simple tasks can be draining and can even draw against the energy available for the next day. A friend with lupus deserves support and appreciation, not selfishness and guilt.

The way to be a good friend to a person with lupus is to be flexible and understanding, and other, less-taxing ways to spend time with them.

“It Could be Worse!”

The only phrase more annoying is “I know how you feel.”

Both are dismissive and undermine their experience of their symptoms. Everyone dismisses their symptoms, even doctors, they don’t need someone else they care about doing it too.

These are forgivable, though, since they are an attempt to console and commiserate, and a natural reaction to being told about someone’s symptoms.

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What to Say to a Person with Lupus

So what do you say to someone with lupus that isn’t accidentally insulting and rude? Well, what people with lupus need is positivity and support. Don’t minimize their symptoms, and just be a friend to them. Here are a few suggestions.

I’m Sorry to Hear That.

Or “I’m sorry you’re going through this.”

It’s difficult for someone who has never experienced the symptoms of lupus and other chronic illnesses to find the right thing to say, but sometimes it’s as simple as saying that you’re sorry that this what they are experiencing. It’s a good thing to say when you have nothing else, and it also shows that you care about their feelings and their fight.

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Can I help?

Or “Is there something I can do?”

You can’t cure the disease, but you can help in other ways. You can pick up groceries or medications, do a little housework, help someone up the stairs. You can be mindful of the temperature, flare triggers, and tone of voice.  Running an errand for a friend with lupus is one less errand that they need to spend spoons on. Sometimes, though, if you know them well enough, picking up a treat or a small present on your way can mean the world.

There is a lot that you can do, but always ask first. It both offers aid and also asks if they want help. Some people with lupus would rather do things themselves. However, the offer to share the burden is still appreciated, as is the fact that you didn’t make the decision for them.

“Let’s Try This Activity Instead!”

Or “Let’s do something together. What can we do?” “I’m free this weekend, just let me know what you’re up for.”

Fatigue is frustrating for everyone involved. However, it isn’t the fault of the person with lupus. If you want to spend time with a friend or family member with lupus, find an alternative that doesn’t take as many “spoons!” There are many lower-energy activities out there and trying something new is always a wonderful bonding experience. A little flexibility in your schedule and what you want to do goes a long way to showing that you truly care about them as a person. That is a feeling more valuable than gold!

You can talk to me any time.

People with lupus have a lot of pain, frustration, and stress in their lives, and they, like everyone else, need someone to vent to. Sometimes, the best thing that you can do is be a listening ear and a shoulder to lean on.

You’re Doing a Great Job!

Lupus is a hard disease to deal with, and it can cause many struggles. Just hearing that “You’re doing great” is exactly what someone needs. It doesn’t seem like much, but sometimes a little appreciation can make someone’s day a little brighter.

Comments (21)

21 thoughts on “What Not to Say to Someone With Lupus

  1. Great article! Yep, heard it all; even from my doctors. My favorite: “You don’t look sick.” That was from my doctor! It was actually his way of saying he “sees”‘ me. & thank God! Because a few years ago, I misjudged a flare. Thankfully, I had an appointment. As soon as he say me, his casual, “how are you doing” demeanor changed; he got serious. After a few questions, he shot me over to the ER, and then ICU for 3-days. They didn’t think I’d make the night. He saved my life that day, simply by “seeing” me. Great doctor!

    1. I too have heard the same statements. My dermatologist saved my life by ordering labs. My son, answered the phone call from the lab (he’s my health proxy). He had to rushe me to the hospital. He was told not to let me rest, I might not make it overnight. Thankfully, I found excellent doctors.

  2. I have heard all these things! It is frustrating and depressing having to continually explain the effects of this illness. One of the best things that friends/colleagues/relatives can do is to read about the illness so that they might better understand the chronic burden it brings.

    1. It was a doctor they told me the first time I met them all lupus doesn’t hurt what the hell is wrong with you I stop going to him a quick he’s in Apple in California

    2. It was a doctor they told me the first time I met them all lupus doesn’t hurt what the hell is wrong with you I stop going to him a quick he’s in Apple in California

  3. By publishing this wonderful article you are preaching to the Lupus Choir. It would be great if you could get this out to the general media for our friends who otherwise would not know these messages. Thanks!

    1. Perhaps share it on your social media if you have it. Articles from here are nice for that reason. You can say to your friends and family what you want to say using someone else’s voice. For some reason sadly, that’s often received more favorably than when we say it.

  4. I love this article because it is what people with Lupus hear a lot and it can either help you or hurt you, sometimes you hear these comments from people and you either try to push yourself to satisfy them which is draining your energy because they don’t understand or When they say you don’t do anything anymore which can cause you to get depressed because you feel like your losing yourself and you are becoming an introvert. Thanks for the article it’s very helpful when we are trying to understand our new way of living with Lupus and the changes we have to make in our lives their comments can put an extra burden on the mind.

  5. I love this article because it is what people with Lupus hear a lot and it can either help you or hurt you, sometimes you hear these comments from people and you either try to push yourself to satisfy them which is draining your energy because they don’t understand or When they say you don’t do anything anymore which can cause you to get depressed because you feel like your losing yourself and you are becoming an introvert. Thanks for the article it’s very helpful when we are trying to understand our new way of living with Lupus and the changes we have to make in our lives their comments can put an extra burden on the mind.

  6. This article is a good guide not just for speaking to people with lupus, but any other person who is not well. At 19 years old, I had someone telling me in the face that I was ugly because my face was covered with vasculitic rash. That was one day after I got diagnosed with lupus and was so numb with the diagnosis. Later on, people asked me to work out and shed the weight when they saw my moon face. All these comments made me think less of myself for many years and rattled my confidence all the time.

  7. Thank you! I read the article and cried. I’ve been ill for over ten years. I’ve heard all of these comments and more. Those people have thankfully faded from my life who were not understanding or just downright mean. Unless you’re going through it, you really don’t know. Any help or empathy goes a long way. I didn’t choose to be sick. I am grateful for the very few people in my life who get that and love me.

  8. Thank you! I read the article and cried. I’ve been ill for over ten years. I’ve heard all of these comments and more. Those people have thankfully faded from my life who were not understanding or just downright mean. Unless you’re going through it, you really don’t know. Any help or empathy goes a long way. I didn’t choose to be sick. I am grateful for the very few people in my life who get that and love me.

  9. Thank you! I read the article and cried. I’ve been ill for over ten years. I’ve heard all of these comments and more. Those people have thankfully faded from my life who were not understanding or just downright mean. Unless you’re going through it, you really don’t know. Any help or empathy goes a long way. I didn’t choose to be sick. I am grateful for the very few people in my life who get that and love me.

  10. I had missed a couple days of work because of a flare. When I came back, a co-worker said, “Aren’t you over that yet?!” She was referring to me having Lupus!!

  11. If I hear”You look great! You don’t look sick at all” one more time! It’s hard to respond to that, because I know my illness doesn’t Outwardly show, so it’s much harder to refuse what people say. 🙁

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