What to Do (and What NOT to Do) When People Don't Believe You Have a Chronic Illness

Patient Expert

There you are, talking to a family member or friend, and all of a sudden they say something about your chronic illness. Their words make it abundantly clear they don’t actually believe that you are, in fact, sick, or that your disease is that serious. That sort of doubt can shake you to your core, and it can be difficult to keep your cool and respond in a constructive way. Here, I’d like to share a tongue-in-cheek list of what you should not do when someone doesn’t believe you have a chronic illness. Later in the post, I’ll share some suggestions of what you can do.

What NOT to dalk away. Turn around and walk away (or limp, depending on your pain levels). Ensure disgusted look is well in place while the other person can still see your face.

Pro: A satisfying method of nonverbal communication.

Con: Leaves the other person’s opinion entrenched.

Printed materials. Hand the person a selection of books and brochures on your chronic illness in particular and chronic illness in general, along with a sociological treatise on stigma that you keep on your person for just this purpose.

Pro: Prepared, efficient, marking you as a truly committed advocate.

Con: Intended audience is not likely to read the material. They may also think you ought to be committed.

Young man carrying stack of books, close-up, portrait

Cry. Burst into tears while blubbering an incoherent recitation of how your disease affects every day of your life, and how their judgment is the last straw. This might require some practice in order to produce adequate amounts of tears on command.

Pro: Likely to convince others that your chronic illness is no laughing matter.

Con: May also convince others to sidle away with a nervous look on their faces and not talk to you again.

Make a raspberry. No, not the fruit. The other one in which your mouth makes an unmistakable noise.

Pro: Succinct, eloquent, and saves your breath for more important things.

Con: This approach works much better when you’re five years old.

Body language. Engage in rude and vigorous hand gestures that clearly communicate your thoughts on the other person’s attitude toward your illness.

Pro: Doubles as range-of motion-exercise.

Con: Might hurt the joints in your arms and hands.

Couple has an argument

Yelling. Fly off the handle, loudly berate the person. Impugn their character, ancestry, and make derogatory comments about their hair.

Pro: Wonderfully invigorating and sure to make you feel very satisfied.

Con: Unlikely to achieve anything except the loss of the relationship.

Angry fury woman screaming man closes his ears.

What TO dtart a conversation. Ask the other person some questions. A simple “Why do you say that?” can be the start of a conversation about their feelings, giving you the opportunity to share more about your illness and how their reaction makes you feel.

Pro: Likely to result in an honest conversation that can bring you closer together.

Con: Requires you to take a deep breath and keep your cool.

Coffee in my mother's house taste the best

Be vulnerable. Show the person the effect their words have on you. Admit that it hurts. If you tear up, don’t turn away.

Pro: Enables you to be authentic, and allows the other person the opportunity to apologize.

Con: Being vulnerable in front of someone who has hurt you is really hard.

Printed materials. Give them a copy of the pamphlet about your chronic illness that you carry around for just that purpose. Indicate that you’re willing to answer any questions they may have.

Pro: Prepared, efficient, lends a personal touch to your advocacy.

Con: The other person is likely to have questions, potentially keeping you talking for hours.

Couple in kitchen looking at travel brochure

Walk away. Sometimes, no amount of talking, educating, or advocating will help. The person is stuck in their belief and there is nothing you can do to change it. Walk away and get on with your life.

Pro: Maintains your sanity, and protects you from the pain of being around someone who stigmatizes you.

Con: It can feel like giving up.