10 Things Not to Say to Someone with Chronic Illness

Woman weeping with finger pointingThe Center of Disease Control reports that six in ten adults in the United States have a chronic illness, like multiple sclerosis, ALS, diabetes, kidney disease, and major depressive disorder. Because chronic illness is so common, it’s likely you have a friend, parent, co-worker, or maybe even you, have one.

Chronic illnesses can be tricky because they are often invisible, or may not show more severe symptoms like inability to walk or labored breathing until later stages of the condition. This can make it challenging to know what to say and what not to say when someone you know is dealing with chronic illness.

The best way to speak with someone with chronic illness is to come from a place of support and empathy, and more importantly, be a good listener. Here are a few things not to say and what to say to someone with chronic illness:

What Not to Say to Someone with Chronic Illness

1. You don’t look sick

While this is usually meant as a compliment and has good intentions, it may imply that someone with chronic illness may be faking it or the illness isn’t severe. Many chronic illnesses are ‘invisible’ and ‘silent’ diseases so unless someone talks about their symptoms, you can’t tell what they are physically feeling. Remember, what you see on the outside isn’t always a reflection of what’s going on inside.

What you can say:

“You look beautiful/handsome today”
“It’s great to see you today. How are you feeling?
“Is there anything I can help you with?”

Simple compliments, especially non-physical compliments, can go a long way. Supporting someone doesn’t mean directly talking about their illness. By asking open-ended questions about how they are in general and how you can support them opens the door for conversation and the opportunity to show you care.

2.  I hope you’re feeling well

Chronic illness is complex and often can produce a variety of symptoms that change in frequency and intensity over time. While some days are better than others, people with chronic illnesses rarely feel well. When you say this to someone it can often remind them that their condition will not go away or get better anytime soon. It can also trigger feelings of loneliness and isolation, a reminder that unless you have a chronic illness, you really don’t understand the situation. Though you have good intentions, a phrase like this brings disconnection rather than connection.

What you can say:

“I’m sorry to hear you’re not feeling well”
“Sending you love and care today”
“I hope you have a low pain day today”

3. Have you tried…?

Fill in the blank. Most of the things suggested are not backed by science to help specific conditions, or can only be done under certain circumstances, like a low pain day. Even if some things do have scientific evidence, it suggests that the person with chronic illness hasn’t tried every option already because chances are they have. It can be condescending and make someone feel like they aren’t trying hard enough when in fact, every day they are putting their best foot forward.

What you can say:

“I see you trying so many things, would you mind if I make a suggestion?”
“Is there anything that helps your pain?”
“How can I help you?”

4. It could be worse

Life isn’t a competition about who’s feeling worse than who. All pain is valid regardless of what anyone is going through. Comments like these diminish the reality of chronic illness and minimize the person’s experience. It can also seem like you’re taking away someone’s right to feel sad, angry, or hopeless about their condition, increasing feelings of loneliness.

What you can say:

“I’d love to learn more about what you’re going through”
“I don’t know what to say, but I’m here to listen”

5. It’s mind over matter, stay positive

It is true that pain originates in the brain and can be retrained to reduce pain, but this retraining takes time and this kind of therapy takes hard work. If self-motivation was easy and positive thinking could be a cure-all, there would be fewer cases of chronic illness. Unfortunately, that’s not the case. Saying things like this can make people feel like they aren’t trying hard enough to remain positive and grateful for the blessings things they do have.

What you can say:

“It sounds hard to deal with your chronic illness”
“You work so hard every day, I don’t know how you do it”

6. It’s just stress

Statements like these start the blame game and implies the person let this happen to themselves, that they are in fact the root cause of the condition. Having a chronic illness is stressful enough and no one wants to feel like they caused their condition. Stress can trigger or exacerbate issues, but it never acts alone. A statement like this lacks empathy and disregards other factors involved. Assuming it’s stress can dismiss and devalue the knowledge and awareness they have of their own body.

What you can say:

“That’s so frustrating”
“I hope you can find out what’s wrong”

7. I’m tired too

Fatigue floods the entire body, making every moment no matter how small feel nearly impossible. It drains all of your energy, physically, mentally, and emotionally. Feeling tired is very different from feeling fatigued. While everyone gets fatigued from time to time, the experience for someone without chronic illness is vastly different from that of someone who does. This kind of statement leaves someone with chronic illness feeling lonely and invalidated.

What you can say:

“Fatigue is draining. Is there any way I can help take some pressure off?
“I’m really sorry you’re feeling fatigued”

8. You cancel plans often

When someone’s feeling fatigued, experiencing a flare-up, or depressed about their condition, it can mean canceling plans at the last minute to rest. It can be frustrating and upsetting to both parties. Social isolation can wreak havoc on physical, mental, and cognitive health. It can cause things like increased depression, poor sleep, cognitive decline, poor cardiovascular function, and worsen symptoms of chronic illness. People with chronic illness would rather be out spending time with friends and family, instead of being stuck at home in pain. When you point out that they are frequently canceling plans, it results in more guilt and stress.

What you can say:

“It would be great to have you there, but I understand you can’t make it”
“I’m sorry you feel bad and can’t make it”
“Do what you need for your body”

9. At least you have time to rest

Many people who are stuck at home with chronic illness are in distress about their inability to function. The inability to work, spend time with friends, participate in hobbies, is not an active choice. Most people often struggle financially because of it. While it’s easy to romanticize being at home with minimal responsibilities, it neglects the fact people are home because they are too sick to be out. Statements like this minimize the experience and expense of chronic illness.

What you can say:

“It must be difficult, I’m sorry you’re experiencing this”
“Is there anything I bring to you?”

10. I know how you feel

Empathy is a powerful skill. But unless you have a chronic illness – or any illness for that matter – you can’t know exactly how anyone feels. Comparing acute pain to chronic pain diminishes someone’s experience and can be offensive. Learning to be empathic in the right way can help people feel less alone in their chronic illness.

What you can say:

“I wish I could understand how you feel”
“I don’t know how it feels, but I am here for you”.

Meet Others Where They Are

The best way you can support someone when they are experiencing a chronic illness is to show compassion and meet them where they are in their condition. Taking pity, providing solutions, giving advice, and being judgemental isolate people with chronic illness and can make conditions even worse. Sometimes a listening ear is all they need.

To better understand friends and family members with chronic illness, join the conversation at PatientsLikeMe so you can learn about their illness, understand what it’s like, and hear personal testimonies.

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