Stop Saying ‘You Don’t Look Sick’ to People with Autoimmune Disease

If you know someone with an autoimmune disease, it’s important to be mindful of what you say to them. As someone who has lived with Crohn’s disease for 19 years, I can offer some guidance on what not to say. Coping with an autoimmune disease can be isolating, so having a strong support system is crucial. People often don’t mean to be insensitive, but it’s important to know how to support those with invisible illnesses.

You Don’t Look Sick

Many autoimmune diseases are part of the category of invisible illnesses, which can often lead to misunderstanding and misdiagnosis. It’s important to avoid making comments like “But you don’t look sick or But you look great,” as this can be frustrating and invalidating for someone dealing with these conditions. Many people with autoimmune diseases experience daily pain and suffering, especially during active flare-ups.

It Could Be Worse

Trust me; we know it could be worse. Everything in life could be worse. It’s insensitive to say “it could be worse” to someone suffering from an autoimmune disease. It isn’t a competition. We are all dealing with the difficult hand we’ve been dealt as best we can. Chronic illness is often disruptive to our finances and personal relationships. Saying this is very dismissive of the struggles we are facing. The focus should be on empathy and understanding during these difficult times.

My Cousin’s Friend’s Sister Has Your Illness, And They Are Fine!

That’s great news! However, it’s important to remember that illnesses can vary in severity. Each person and disease is unique, and it’s up to each individual to discover their own path to wellness.

Have You Tried …?

We get a lot of unsolicited advice. Most of us have tried every diet and treatment under the sun to manage our autoimmune diseases more effectively. We have to be our own advocates and do a lot of research. Whatever new treatments are out there, chances are we’ve tried it. While we appreciate advice from others who mean well, we are fully committed to doing everything in our power to improve our well-being. Making thoughtful and informed decisions regarding holistic treatments is crucial for everyone.

At Least It’s Not Cancer

It still blows my mind that someone would say, “At least it isn’t cancer.” Never say this. I was honestly too stunned to speak when it was told to me. A lot of autoimmune diseases are incurable. We know cancer is terrible. Many of us have been devastated by cancer in our families. It’s a horrible disease; we are grateful it isn’t cancer. Why compare? Reminding us that at least our chronic illness isn’t cancer isn’t uplifting.

Just Be Positive

Staying positive is something most of us are already trying to do. There will be up and down times in our journey, and we are doing our best to stay positive. Saying things like this can make people feel like they aren’t trying hard enough to remain positive and grateful for the blessings they do have.

It’s Just Stress

Stress can worsen chronic illnesses, but other factors may also be at play. Assigning blame to the individual is unhelpful, as this can imply that they are solely responsible for their condition. Understanding the various causes of chronic illnesses can help us discover better treatments and support people toward improved health.

To best support someone managing a chronic illness, showing empathy and acknowledging their situation is essential. Unsolicited advice, judgment, or solutions may make them feel isolated and worsen their condition. Sometimes, you don’t have to say anything at all. They need a listening ear.