Five things not to say when someone has an invisible disability

A group of CAMHS Equality Champions, including young people, parents and workers, have been sharing personal stories, resources and information over the last few months in order to raise awareness and understanding of invisible disabilities. As we head into 2022 this latest piece from the group shares some thoughts on how to engage appropriately with someone who has an invisible disability, thinking particularly about what not to say.

5 things not to say to people with invisible disabilities

Taken from the Hive Learning website.

1. “But you don’t look sick!”
One major challenge of invisible illnesses is that they’re, well, invisible. Someone who says: “But you don’t look sick!” is probably trying to give a compliment and means well – after all, no one likes to look sick! However, to someone with an invisible illness this actually sounds like disbelief, that they’re not really as sick as they say they are.

What to say instead: “This must be frustrating for you. What can I do to support you?”

2. “At least…”
There are tons of ways this sentence could go; “At least it’s not cancer,” or “At least you have a family to look after you,” and so on. You may think that you’re helping someone see the bright side when you say this, but what you’re actually doing is minimising their experience.

What to say instead: Reflect back to show you understand what they’re saying. “I hear you say that you’re struggling today. What can I do to help you?”

3. “Have you tried yoga/cutting out gluten/taking herbal remedies?”
There are probably lots of remedies that you, your cousin, your best friend’s roommate and so on, have tried that you’re just bursting to share. However, it suggests that if they haven’t thought about these options, they’re “behind”, or aren’t managing their disability adequately. In the future, it’s best to leave the medical advice to the professionals.

What to say instead: “What helps you to feel better?”

4. “I know how you feel.”
Unless you have exactly the same kind of illness, chances are you don’t know how they feel. Even then, your experiences may be different. A bad night’s sleep doesn’t feel the same as chronic fatigue syndrome. An upset stomach doesn’t compare to Crohn’s disease. It’s nice that you’re trying to empathise, but you can’t understand exactly how they feel if you’re not going through the same thing.

What to say instead: “You’re not alone and I’m here if you want to talk.”

5. “You’re so brave.”
Telling someone you think that they’re brave comes from a place of good intentions, but most people just find it patronising. People with invisible illnesses want to be seen as people, not superheroes.

If you would like to contribute to this work on invisible disabilities in some way, or if you know of any young people, parents or carers that would like to be involved, please contact Robin Tay, CAMHS Participation Worker, by emailing robin.tay@nhs.net.