If you’ve ever been sick for more than a fortnight or had some kind of invisible illness or disability, you will no doubt be familiar with this scenario: you mention taking a day off school or work, missing an event, or going home early due to a medical problem…and someone is overcome with the urge to let everyone around you know that “YOU DON’T LOOK SICK!”

Yes, thank you person, what would we do without you?

(╯°□°)╯︵ ┻━┻

Unfortunately, there will always be people who can’t (or choose not to) see outside of their very narrow view of what illness and disability look like, so I’ve decided to put together my (mostly) mature suggestions of how to calmly deal with this comment from a variety of people you may encounter.

The well-meaning relative

This person loves you and probably just wants you to get better so badly that they are primed and ready to attribute literally anything to being a sign of recovery. Comments may take the form of “you look healthy” or “you look so much better!” rather than the classic “you don’t look sick.” These can still be incredibly frustrating, especially if you’ve had to fight hard to have your symptoms taken seriously. They may also bring up feelings of resentment if you feel that your family are more interested in making themselves feel better about your progress than actually listening and empathising with you.

What to say?

Start by acknowledging that your family member is coming from a place of intended kindness. Something like “thank you [well-meaning relative], it is nice to be able to pass as healthy when I want to, but the trouble is that if even my FAMILY think I look well, you can imagine how hard it is to get doctors/therapists/employers/professors to take my situation seriously.”

This is a great way to subtly educate your relative on how their comments may unintentionally be contributing to unhelpful stereotypes about illness or disability without making the situation personal or confrontational.

The friend who doesn’t quite “get it”

This is a tough one. They haven’t been unkind or dismissive, maybe they’ve even been there to listen to you vent during tough times, but you can tell that they don’t really understand the depth of your situation. They are constantly asking you if you are “better yet” or expecting that you are just a dose of vitamins or a course of antibiotics away from full health.

What to say?

It can be easy to lose it on this person, but try to remember that their comments probably come from a lack of education rather than wilful ignorance. Try “thank you [friend who doesn’t quite get it], I know you are trying to pay me a compliment, but it actually makes me really sad that I have to carry around this invisible suffering that no one else can see, so I would appreciate it if you could avoid making comments about my appearance in the future.”

I understand this may be a little uncomfortable, but you’re unlikely to be able to move forward in your relationship with this person without some blunt discussion. If you aren’t quite ready to have that conversation yet you can try “thank you [friend that doesn’t quite get it], but actually, I don’t feel like my appearance has changed much over the course of my illness and so I don’t think it is a good indicator of how I am doing.”

The sh*t-stirrer

This person does not have good intentions. They are the one that seeks you out in a public setting to make these comments to invalidate you or pressure you into doing something you don’t want to (or can’t) do. They undoubtedly have their own issues, but those are not your problem.

What to say?

Some people might tell you to just ignore this person, but in my opinion it’s best to shut this sh*t down as soon as it starts happening, lest they start making a habit of it. Show this person that these comments are poorly thought out and not appropriate. Try responding with questions of your own, for example: “So what exactly does chronic illness look like [sh*t-stirrer]?”, “Why do you think that’s a helpful or appropriate thing to say [sh*t-stirrer]?”, “Do you think you know my body better than my doctor and I [sh*t-stirrer]?”.

There’s a chance that this person might respond by playing the innocent victim, especially if there are other people around (“it was just a compliment!” or “I was just joking!”) but you both know what a load of BS that is. Be mentally prepared to follow up with something like “oh ok, you should know it doesn’t come across that way.” or “ok, well you should know that your choice of words came across as quite ignorant/insensitive there.” Make it clear that they are the only one responsible for what they have chosen to say and that you won’t let them deflect.

The stranger

In some ways this is the most infuriating of all. Whether it’s a passer-by who feels the need to question your use of mobility aids or someone who thinks they know everything about you after 2 minutes of small talk, I still struggle to understand why these people think their opinion is needed.

What to say?

It’s up to you how much energy you think is worth spending on this person. Will you ever actually have to see them again? If it’s a passer-by and you just want to send a quick, clear message for the sake of the next guy, a simple “Did I ask?” or a deliberate look of confusion and bemusement will likely be enough to make them re-think their comments. If it’s an appropriate setting and you think you can handle any resulting tension, something a little more direct like “that’s an odd comment to make” or from above “why do you think that’s a helpful/appropriate comment to make?” may be better. The best case scenario is that this person actually DOES think twice about what they are saying next time, but at the very least you will have set clear boundaries for if you do ever have to deal with them again.

It can be incredibly draining to constantly have the validity of your health problems questioned and you’re not obliged to always play the role of educator to those around you. Sadly, chronic-illness and disability are still incredibly threatening to certain people and some may choose to respond to this perceived threat with denial. Fortunately, I’ve found with a little-forethought (and practice) it’s easy to reduce how much these interactions affect you. Remember, at the end of the day, the most important thing is that you are confident in your own choices and that you show yourself the compassion you deserve. Focus on your relationships with the people who have invested time in getting to know you and what you are going through. Communities like The Mighty or chronic illness related sub-Reddits are great for meeting other people who can relate to your situation and for sharing tips and support.

How do you deal with unsolicited comments about the way that you look?

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5 thoughts on ““Did I Ask?” and Other Appropriate Responses to “You Don’t Look Sick”

  1. I feel somewhat fortunate in that I haven’t experienced this verbal intercourse yet. I get a lot of “hope you feel better soon” when I don’t even know clearly what’s wrong, let alone when/if I will be “better”.

    I feel like a lot of people (read: doctors) are *thinking* that I don’t look sick, and that until I understood this it silently held me back, as doctors that don’t think you are seriously ill are proportionally unhelpful according to this metric they have in their minds about you.

    It took me 41 years to get my hEDS diagnosis. It took a few years of actively looking at cardiac/thyroid symptoms post-cancer treatments to be correctly recognized as having POTS. It will take who knows how long for them to figure out my neurological complications surrounding my CCI. And I expect that if no one says “Oh, you don’t look sick” in that time frame, they will be thinking it. Perhaps these quips will help if I ever hear the dreaded words aloud.

    Thanks for sharing 🦓♥️

    1. Hi Anna-Marie,

      Congratulations on getting your hEDS and POTS diagnoses, I’m sure it required a boat-load of hard work and patience!
      It sounds like even if on that journey you didn’t hear the exact words “you don’t look sick,” you definitely felt the pressure that our outward appearance is (mistakenly) correlated with how we must be feeling on the inside. I’m sorry that you have yet to get to the bottom of your other health difficulties, I’m sending you strength! I’m still on the diagnostic journey for some issues so I definitely empathise.

      xx Jess

  2. Thanks Jess, this has been really helpful. Articulate, illuminating and really great practical application. Grateful 🙏🌟

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