You probably know someone with a chronic illness without realizing it. About 6 out of every 10 Americans has a chronic or invisible disease, according to the Centers for Disease Control and Prevention (CDC).
That’s more than half of everyone in the U.S.
Some of these diseases – like cancer, diabetes, heart disease, chronic lung disease, rheumatoid arthritis, fibromyalgia, and others – are hidden. Unless you’re close with the person, you probably don’t know they have a chronic condition. When you find out, you might have questions. Or you may simply want to say something heartfelt to comfort them.
“Many patients with chronic illness have shared that they appreciate that their friends and loved ones take interest in their health journey and ask questions if they need information,” says Brenda Doremus-Daniel, LCSW, a psychotherapist working in primary care at UVA Health. She helps patients cope with the anxiety, depression, stress management, and other mental health issues that often accompany chronic illnesses. “However, they don’t want this to turn into the sole focus of the relationship.”
“They still want to be included and appreciate when others understand that they sometimes have to cancel plans or need adjustments or accommodations during time together,” she continues. “This may include choosing a restaurant with specific menu items or picking an activity that is more gentle on the body. If we are not certain what is preferable for someone else, just ask.”
“But I’m Just Trying to Be Helpful”
Your comments may come from a good place. But they may be hurtful without you realizing it. It’s important to think about what you’re saying and how it may affect someone living with a chronic disease.
We reached out to you through our social media channels to see what are the things not to say to someone with a chronic illness. We got many comments that people with chronic or invisible diseases sometimes hear from well-intentioned loved ones. Here were some of the responses:
1. “You don’t look sick.”
Although you may think you’re making someone feel better, this statement can feel like you don’t believe the person. Remember, you mostly can’t tell if someone is sick just by looking at them. And no one should be made to feel like they must “prove” they’re sick.
When we asked online, users with chronic conditions told us they’d heard, “My chronic appendicitis was ovulation pain – I looked too good to be sick,” and “But you don’t look diabetic?” One user commented, “You don’t know what I feel and deal with daily.”
2. “But you’re so young!”
This one is pretty similar to #1. Again, this kind of statement can feel like you’re just not believing the person. It can also make them feel like you believe they’ve done something wrong to cause the illness. Although you may think bringing up someone’s age is a compliment, the reality is that chronic illnesses can affect people at any age.
Online, users said they’d heard comments such as, “Young people can’t have heart disease,” or “You’ll grow out of it.” As one social media user said, “It’s chronic; it’s not going away.”
3. “You should get a second opinion.”
Don’t assume the person hasn’t done enough to figure out what’s affecting them. This comment may imply that you don’t think they’re being diligent about their health. While getting a second opinion is useful (consulting with several doctors can lead to the right diagnosis), saying this sounds like you don’t believe what they’re telling you.
When we asked, users said they’d definitely heard, “Why don’t you get a second opinion?” One user noted, “Disability is very expensive. Insurance is difficult to deal with.” Another said, “I did! And a third, and a fourth! I’m trying my best.”
4. “You’re probably just stressed.”
Again, this kind of statement downplays and dismisses this person’s experience. It sounds like you think it’s all in their head. Variations on this might sound like: “Have you tried yoga (or some other activity that relives stress)?” or “Maybe it’s just mind over matter.” But it isn’t that simple. Most people with chronic or invisible illnesses are doing whatever they can to feel better.
Our social media users commented they’d even heard, “Try not to think about it,” as if it’s easy to ignore physical pain or distress. One user said, “I keep private the days I cry in the shower.” Another noted that, “My dog helps me x100!”
Doremus-Daniel notes, “Patients with chronic illness often share that this makes them feel invalidated because it implies their illness is ‘all in their head.’ As we know, stress can exacerbate symptoms of some illnesses. However, most often it’s not the cause of the illness.”
5. “It could be worse.”
We all know that there are people suffering worse than we are in this world. But saying so does nothing to help a loved one battling a chronic condition. It takes away from their living experience and dismisses their emotions.
Some social media users noted how difficult it is to adjust to their new normal. This kind of comment belittles all of their hard work.
Are You a Caregiver?
Providing support, especially to a family member, is tough. You have to balance your own emotions with theirs. Although this guide is primarily for caregivers facing cancer, you'll find tips and ideas to help in your own role as caregiver.
What Should I Do?
When people share their health journey with you, they’re not looking for solutions. They likely don’t want your opinion or advice. What they hope for is to be listened to.
“It is not uncommon to feel helpless when someone we care about has a chronic health condition,” says Doremus-Daniel. “After all, we want that person to feel better. What we can do is help that person feel less alone.”
How can we help someone feel less alone? Usually, talking with them and listening goes a long way.
"Asking someone how their illness affects them is a good start," says Doremus-Daniel. "We can help by validating the emotions and struggles that someone with chronic illness shares with us and allow for open, honest communication about how that person is doing (not just how they're feeling physically)."
Acknowledge that someone has shared something difficult with you by saying something like, “That sounds really tough,” or “I didn’t realize you were struggling with that.” It’s okay to simply ask, “How can I help?” You can also be honest: “I’m not sure what to say. But I’m here for you.”
“Keep in mind that sometimes asking, ‘How can I help?’ is a tough question because some folks feel uneasy making requests or feel that they are burdening others,” says Doremus-Daniel. “It may be helpful to suggest what you are willing and ready to do to assist, like, 'I would be happy to do your shopping, pick up your prescriptions, or help with childcare.'”
Being empathetic means knowing when to speak up and realizing when it’s time to keep quiet and offer other kinds of support, like a hug or spending time with someone.