Say This, Not That: What Not to Say to Your Friend With Lupus

One of the hardest parts of being diagnosed with an invisible chronic illness like lupus, is that your friends and family might not understand your illness. Often, they might say things that are meant to be kind, but that are actually harmful. Here is an article you can pass on to friends and family to help them understand how to best support the spoonies in their lives.

DON’T SAY: You look fine.

Many patients with invisible chronic illnesses struggle with symptoms for years before finally being diagnosed. Nearly all of us have sat in doctors’ waiting rooms with our hearts in our hands, hoping that this doctor will be the one who listens and takes us seriously. Unlike someone with a visible disability, lupus patients look normal even when we're feeling horrible.

Every lupus patient I know has had their pain minimized and invalidated because they “don't look sick.” Telling your friend or family member that they look fine isn't the compliment you think it is and might even send the message that you don't believe they're sick.

INSTEAD, SAY: I’m sorry you feel sick.

Rather than commenting on your friend's appearance, validate how they feel inside. Listen when they talk about their pain, fatigue, or frustration with the medical industry. Show them that you see them, not just their appearance, and that you're here for them.

DON’T SAY: I hope it gets better.

Everyone with a chronic illness has had to learn a hard truth that able-bodied people rarely know: sometimes it doesn't get better. Living with a chronic illness means changing your lifestyle, often permanently. It means accepting new limitations. It means giving up activities you love and grieving the loss of the person you once were.

INSTEAD, SAY: I'm here for you.

Being diagnosed with lupus feels like being tossed into an ocean in the middle of the storm. Rather than offering trite platitudes, be the life preserver that your friend can hang onto. Let them know that even when everything about their lives is changing, your friendship will remain the same.

DON’T SAY: Is it contagious?

While your friend may be happy to answer questions, you shouldn't assume they are a walking encyclopedia on all things lupus, or that they want to answer your questions. This is also an insensitive question because it makes it seem like your only concern is not your friend's health, but whether you'll also "catch" lupus.

INSTEAD: Don't ask. Just Google it.

Why does Google exist, if not to answer all the questions that should never leave the confines of our skulls? Why else are “how to be emo” and “where is the internet” the top Google searches? Rather than asking your friend this insensitive question, just do what you do when you're wondering what the plural of platypus is: Google it.

DON’T SAY: If you take this herb/supplement/go to my church/do yoga, you will be cured.

Managing medications and learning which lifestyle changes are needed to manage a chronic illness feels like a full-time job. We would all like to believe that if we just take the right pill or find the right doctor or strengthen our faith, we can be healthy again. And despite everything lupus patients do to control our illness, it is unfortunately incurable.

Every lupus patient has had to spend years of their life coming to terms with exactly what it means to live with an incurable disease.

INSTEAD, SAY: I’m sorry you’re going through this.

I’ve learned that when able-bodied people insist that our disease has a cure when it doesn’t, what they are really revealing is that they are afraid. We humans are all afraid of finding ourselves in a scary situation that doesn’t have an end. We are all afraid of dying or becoming sick with a serious illness that lasts the rest of our lives.

Instead of trying to solve a problem that can’t be solved, just listen to your friends and show your support. Being able to talk to a friend who truly listens and cares about you is sometimes just as restorative as actual medicine.