5 Things Not to Say to Someone With an Invisible Illness

Invisible illnesses like fibromyalgia, chronic fatigue syndrome, Lyme disease, and others are often not well understood even by the medical community and the people that suffer from these disorders. It can be even harder for friends and loved ones of people who have invisible diseases to understand them, and that can make it hard to know what to say at times. If someone you know has the flu, that’s a fairly universal experience that’s easy to understand, and you know what symptoms to ask about, what remedies to offer, and about how long the illness will probably last. It’s easy to support the person with the flu by offering to make soup, pick up cold medicine, and make plans for a week or so in the future when the sick person will probably be feeling better.  That’s not true of many invisible illnesses.

So how can you show your support and care for someone who is suffering from an invisible illness? Take a look at some of the things you should avoid saying to them, and what you can say instead.

1. “You Sure Don’t Look Sick!”

If you’re talking to someone who you care about, odds are that you mean this in the nicest way possible. You’re trying to reassure them that they look good despite their illness, and that’s a good impulse. However, it’s important to understand that people who suffer from invisible illnesses and disabilities often deal with a lot of disbelief from outsiders – from their families and friends, from people who provide accommodations in public spaces, sometimes even from their doctors. While you might mean, “You look good despite being sick,” what your friend likely hears is something more like, “You look good, so you’re probably not as sick as you claim.”

When you know that being disbelieved is a common sore spot for people with invisible illnesses, you can adjust your statements accordingly. Try saying something like, “You look great today, but how are you feeling?” That way, you’re relaying a compliment while also acknowledging that your friend’s illness might be affecting them in ways that aren’t obvious to your eyes.

2. “I Know What You’re Feeling.”

Telling someone that you know how they feel is a common way to try to express understanding and support. But unless you’re suffering from the same illness yourself, chances are that you don’t actually know how the other person is feeling. And even if you do share the same illnesses, it’s worth keeping in mind that the same condition can have different effects on different people.

Saying that you know how someone else feels tends to shut down a conversation. If you really do know, then there’s no point in the other person sharing how they’re feeling, and if you don’t really know, the person who is sick may not feel like first convincing you that you don’t really know how they’re feeling. Instead, ask the person to help you understand their illness. That gives them an opening to talk about how they’re feeling and what they need you to know about their condition.

3. “At Least It’s An Invisible Illness and Not Cancer.”

When you say “at least it’s not cancer” (or Alzheimer’s, or Parkinson’s, or any other debilitating condition) you’re probably trying to do a good thing by getting the person to look on the bright side. Maybe you’re trying to cheer them up by pointing out that it could be worse. However, this really doesn’t work. Just because an illness isn’t the worst illness that you can possibly think of doesn’t mean that it isn’t that bad for the person that has it, and it sounds like you’re telling them that they can’t feel bad about their own illness because other people have different illnesses.

It’s really not useful to compare medical conditions. Instead, ask the person if they’ve made progress since their diagnosis or since their last serious medical event. If they have, comparing their own condition at different times might actually help them see a brighter side. Progress is good. If they say yes, compliment them on how far they’ve come. If they say no, ask what their goal is and how you can help them reach it.

4. “Let Me Know If You Need Help.”

Offering to help a person is a kind gesture, and you may mean it sincerely. But that doesn’t necessarily mean that the person you’re offering help to will reach out when they need it. They may worry that you’re just offering to be polite, or they may feel so overwhelmed by just trying to navigate everyday life with their illness that they can’t think of what they need or how to articulate it, and reaching out to you when you’re not right in front of them may seem like another chore that they’re too tired and sick to accomplish.

Instead of a vague, general offer of help, try offering something specific when you can. “I’m going to the grocery store, do you want a ride?” or “I’m going to the post office, do you have any packages that I can drop off for you?” are good examples. This signals that you do sincerely want to do something for them and it also takes the burden of figuring out what task you can do off of the sick person.

5. “Don’t Worry, You’ll Get Over This and Get Back to Normal Soon.”

Telling someone that they’ll get well and life will go back to normal is one of those statements that’s useful when someone has the flu, but it’s not so useful when someone is suffering from a chronic illness or invisible disability.

The reality is that they may not ever get over their illness. Many invisible illnesses are chronic, which means that the person who has the illness will be living with it forever. That’s their new normal. Some will go into remission or a dormant period, only to re-emerge at unexpected times, and the person who has the illness will have to live with the knowledge that they could become sick again at any time. That’s their new normal. And even if the illness did go away, never to return, the person experiencing it would most likely feel changed by the experience. Whatever normal was before the illness, it’s probably gone forever.

Instead, tell them “we’ll handle it together.” This expresses both that you’re optimistic about their ability to cope with whatever the new normal is, and that you’re planning to stick with them through whatever comes next.