Five things NOT to say to someone with an invisible illness
Living with an invisible illness can be incredibly challenging. Whether it's a chronic pain condition, a mental health disorder, or an autoimmune disease, invisible illnesses are often misunderstood and under-recognised. One of the biggest challenges of living with an invisible illness is that it's often hard for others to understand what you're going through. This can lead to a lack of empathy and support, which can be incredibly isolating.
As someone who lives with an invisible illness myself, I know firsthand how hurtful and invalidating certain comments can be. That's why I wanted to share the top 5 things not to say to someone with an invisible illness. These are things that I've heard (and I'm sure many others have as well) that can be harmful and unhelpful.
“But you look healthy”
As someone who was diagnosed with Rheumatoid Arthritis at age 7 and Lupus at 20, I have consistently been told my whole life that “you look healthy - you don’t look that sick!”. I even had a lady tell me on the train that I was being ‘selfish’ for sitting down and using a seat.
This is one of the most common things that people with invisible illnesses hear. While it may seem like a compliment, it's actually incredibly dismissive and hurtful. Just because someone doesn't "look" sick doesn't mean they're not struggling. It’s important to not make assumptions from what someone looks like on the outside regarding their chronic pain.
Invisible illnesses can affect people in different ways, and just because someone looks fine on the outside doesn't mean they're not in pain or struggling with their symptoms. Instead of saying "you don't look sick," try saying something like "I'm sorry to hear that you're struggling. How can I support you?"
2. “You went to (insert event) so you must be over it.”
Comparing someone's ability to function on different days can be unhelpful and judgmental. The conditions of invisible illnesses can ebb and flow in severity. Some days go really well and on other days it’s difficult to work or even just function on a basic level.
This can be confusing for someone on the outside to understand. There’s an assumption that if someone with chronic pain is enjoying themselves, they must be ok.
But in addition to having ‘good days’, many people have learnt to cope with their symptoms or unknowingly to others, have rested for days before to store up enough energy to participate.
3. “You just need [insert unproven treatment here]…”
While it may come from a place of good intentions, suggesting a remedy or treatment to someone with an invisible illness can be frustrating and invalidating. Many people with invisible illnesses have tried numerous treatments and remedies already, and it can be disheartening to hear yet another suggestion. It can make someone going through chronic pain feel minimised and like their chronic pain isn’t serious.
Instead of offering unsolicited advice, try asking questions like "What has worked for you in the past?" or "How can I support you in managing your symptoms?"
4. “Why didn’t you respond to me straight away?!”
People with invisible illnesses may not always have the energy or capacity to respond to messages or calls right away. Asking them why they didn't respond immediately can be invalidating and place unnecessary pressure on them. Instead, meet the person with compassion and understanding, as it may take them longer to reply than normal.
5. “It could be worse”
Invalidating someone else’s pain is a huge no-no. It is rejecting that person’s right to express their pain and what they are going through, which can damage their mental health. This type of comment can make the person feel like their illness isn't serious or important. It's important to acknowledge that any illness can have a significant impact on someone's life, regardless of how it compares to others. Instead, offer support and empathy, and let them know you're there for them.
People with invisible illnesses often face invalidation and scepticism from others. By avoiding these common phrases, we can create a more supportive and understanding environment for those with invisible illnesses. Instead, offering support, empathy, and understanding can go a long way in helping them feel validated and heard.
About the author:
Lucy Green is the founder of Homebody Club®, a space for embodied and accessible well-being for all bodies, to guide you back home, to yourself. At age 7, Lucy was diagnosed with Rheumatoid Arthritis and in her early adult years, was additionally diagnosed with Lupus, Anxiety and Chronic Fatigue.