“But you don’t look sick”

– A seriously misguided or woefully misinformed person

Oh lord, is there anything more dreaded than an uneducated comment like this one? In the year since my diagnosis, I have heard quite a few questions like this one from family, friends, coworkers, strangers, and even doctors (not all doctors are created equally, they are human too!). The “looking sick” question is probably the one I get the most.

“When you have an invisible disease, your sickness isn’t your biggest problem. What you end up battling more than anything else, every single day, is other people.”

Heidi Cullinan, Carry the Ocean

I think there’s more than one reason someone says this to a chronically ill person. I also know for a fact that people don’t necessarily say these things to be hurtful, but anyone who has taken intro to philosophy knows that intent and impact don’t always line up. We can’t control how other people act, but we can control how we respond. In this post, I am going to cover some of the reasons people say things like this and how I have responded to them.

It took me a while to be able to take a breath and recognize where someone is coming from when they say these things. It is easy to feel defensive because a) you’re in pain and b) you are being attacked and your feelings are valid, but I try to do my best to stay calm. I figure if I can educate the person just a little bit or even just instill some trepidation around making comments like that, then I might save a fellow invisible illness sufferer discomfort down the line.

They are trying to cheer you up

Usually comes from: a friend or family member who you don’t see every day.

Intention: I get this a lot from friends when I actually do try to open up about what I am going through. They’ll say things like “but you still look incredible” or “you would have no idea” and my stomach just sinks. I think they are trying to make you feel better by letting you know strangers can’t tell you’re sick, but they don’t realize that having to explain your invisible illness to people is more than half of your battle.

Response: In an instant, I regret saying anything at all because now in addition to everything I am already dealing with, I am now annoyed at my friend. Typically with this one, I try to say something like “I wish they could, maybe then people would be more understanding.” Comments like these from friends/family can be some of the most challenging because they are not coming from an ill-intentioned place.

“Telling me there is no problem 
won’t solve the problem.”

Emm Roy, The First Step

They are questioning the validity of your symptoms

Usually comes from: coworkers, acquaintances, or strangers

Intention: I like to think that there’s good in everyone, and that when they ask this it is 100% because they want to learn to better understand what you’re going through. Unfortunately, it often is said in this way when they are calling into question your ability to do something or you “actually being sick”

Response: When I get it from acquaintances or strangers, I usually try to keep it short and sweet so as not to get into an argument. I’ll typically say something like “Well I hope you never get what I have, I wouldn’t wish this pain on my worst enemy” and walk away. Depending on HOW rude the person is, I may instead say “That’s crazy because you do look stupid!”, but I would not recommend others risk their health and safety by insulting strangers. When I get it from coworkers, I think its necessary to establish a boundary, as you have a right to feel comfortable in your workplace. I have said things like “There’s also no way to tell someone has a bachelor’s degree just from looking at them, but you trust that HR verified that Mary*. If you have any further comments or questions about my health, I would be happy to schedule a meeting for you and I with HR so you can satisfy your curiosity” *Sample name, no Marys were used in the production of this blog post*

“Pain does not need to be seen to be felt.”

Emm Roy, The First Step

They are feeling inconvenienced by your illness

Usually comes from: those closest to you

Intention: This is the worst one. This is your well-intentioned, but ignorant mother/father/partner/family member, who is having a “but you were able to do XYZ last week” moment. They love you, they are likely doing the best they can to understand your condition, but they are human. Humans are inherently selfish, our self-preservation instincts are what got us here today. This “but you don’t look sick” is often brought to you in part by doing your hair/make up or putting on “real” clothes, so they assume you must be feeling great. When you are not able to do something they want, that selfish instinct kicks in and they start trying to quantify your illness by making comparisons to other previous instances.

Response: These responses will be different depending on the person and how much you truly feel like they normally understand and respect your illness. I would probably go with “I know you are well-aware of how serious my condition is and I know you would not want me to jeapordize my health for something trivial like *insert activity they wanted to do here*. In case it wasn’t clear, I still have fibromyalgia today, like every other day, and will for the rest of my life.” I would also definitely circle back on this conversation later if they don’t apologize, as its important that those in your innermost circle are not only supporters, but also advocates for your condition.

There are a million other instances comments like this happen and obviously this list does not account for each person’s individual comfort level speaking up. Instead, hopefully this can give you some food for thought or ideas of your own, so that you’re not left tongue-tied in the moment.

“Yes, I have tried. Yes, I am still trying, 
and yes, I am still sick.”

Emm Roy, The First Step