How to handle "You don't look sick"

How to handle "You don't look sick"

Sarah Dillingham - CEO & Founder
8 minute read

“But you don't look sick…”

This is a phrase that I've heard several times, and it is something that's quite often said to people with chronic health conditions. It can be really confusing or even annoying when you're on the receiving end.

I've certainly had times in the past where it's been said to me, and I haven't really known how to respond or what to say. So today, I want to do two things:

First of all, I want to explore why people say it and what's behind it, because sometimes people mean different things when they say it.

And then I want to share a technique that I've learned, which really helps me handle that situation. It's a way to deal with that comment and not walk away feeling awkward.

Why do People say it?

When someone tells me that I don't look sick, I usually wonder, what does sick look like? What am I being compared to? What do we think of when we think of a sick person?

When I think of a sick person, I tend to think of someone who's got something very visibly wrong with them. So perhaps they've got a cold, perhaps their sneezing, and maybe they've got a big sweaty forehead, etc. So it's really obvious that they're unwell.

What we all know is that a cold is also something that's temporary, that person's going to get well. Similarly, I might think of someone who's got a broken leg – so again, really visible with a cast and maybe some crutches. And again, it's something that's temporary, something they are going to recover from.

We know how to handle these situations. If I have a friend who breaks a leg, then I will send her a card saying, “Get well soon!”, maybe some flowers. And that's quite straightforward. We all know how to deal with that, but it's different with chronic health conditions.

A chronic health condition is a health condition, that’s lasting longer for 12 weeks, but for the most of us, with chronic health conditions, our conditions are going to last for the rest of our lives. And it's hard for people to know what to say about that. I don't think people are really equipped to know what to say to people with long-term health conditions because you can't say, “Get well soon!”, because that's not going to happen. My symptoms might improve, I might have some good days, but you know, there's no cure. I'm not going to get better.


Some people do mean well, others might not

It's also not very obvious that I have rheumatoid. If I'm in a pub or a restaurant and you see me, unless you actually come up to me and start examining my joints, or unless I've got a mobility aid with me, I look “pretty normal”. You wouldn't look at me across the room and think, ‘Okay, that woman's got an autoimmune disorder’.

So, when people say to me, “But you don't look sick”, I try to bear this in mind. I try to assume that they're coming from a good place, and they are not used to dealing with people with chronic health conditions. Maybe they're trying to say something positive, but they're just doing it in a bit of a clumsy, awkward fashion.

Now, the problem arises when not everybody is behaving like that. Not everybody is well-meaning when they say “But you don't look sick”. So, while I try and give most people the benefit of the doubt and take it in a positive way, unfortunately, there are a few people who mean it in a passive aggressive way.

Sometimes I've had the experience of someone saying it to me with a sarcastic or snarky tone. And what they might be implying is that I'm making it up a bit. Maybe I'm not as sick as I'm making out, maybe I'm putting it on for attention and or to get out of something or whatever it might be.

That's really difficult because it's hard to guess what people mean if they're not really clear. And I would find that very confusing. I used to get quite flustered, I wouldn’t know how to respond, and I'd be there trying to work out if they were having a dig at me or if it was just an awkward comment. It would just be really difficult.


So, what could be a good reaction?

I learned a really great way to handle this: the phrase, “What do you mean by that?”. This is great because it's something that's really easy to remember in the moment. So rather than standing there, getting flustered and trying to guess what people think, I can actually ask them.

I’ve used this a few times, and I've had great results. I've had a couple of times where I've asked people what they mean by it, and the basically said nice things.

They've said, “Well, you know, if I had your health condition, I don't even know if I could get out of bed, let alone get dressed up and come out.” That's a compliment. What they were trying to say to me is that I look good. That I look good despite having a horrible health condition. They were trying to connect to me and be positive, and I like that, so I said “Oh, thank you very much. I appreciate that.”

Now, as I said, there are some people who are saying in a passive aggressive way. By saying, “What do you mean by that?”, it kind of brings out that conversation. They can't hide behind a passive aggressive comment, they have to say what they really think, and that can be a really uncomfortable situation.

I have actually had someone say to me, “Well, you say that you've got this health condition, I see you doing X, Y and Z, and I see you out and about, so I don't think you're really as sick as you make out.” Now, with that person, I was able to say to them, “Well, you don't see me when I'm at home. You don't see me when my legs are swollen up and I've got cold packs on. You don't see me on my bad days, because when I am out in about, those are my good days. So you're only seeing the days when I do look normal, you don't see the days when I actually look sick. You don't see the days when I'm in the hospital having my infusions, you don't see me getting blood tests, you don't see me dealing with side effects of the drugs I take.”

When I had that conversation, I can honestly say, I don't think that person particularly changed their opinion. I think they probably still think I'm putting it on a bit, but I came away from that interaction feeling a lot better about it all. Just the fact that I was able to address their comments and share my view, it was really helpful. If they choose not to believe me, that's up to them. But at least I've been able to say what I think.

More conversation, less guessing

So that's what I think about the phrase “But you don't look sick”. It's definitely something I've heard quite a few times. I do give people the benefit of the doubt when I hear it, because I think a lot of the time, it happens just because people aren't really equipped to talk about chronic illness. I think that the stereotypical image of looking sick doesn't really match what most people with chronic health conditions look like.

I also think it's really important to have something at the back of your mind, like that phrase, “What do you mean by that?”. That allows you to have that conversation, so you are not trying to guess what people mean. And for me, if someone who's saying something about my health condition and they're trying to be passive aggressive about it, I would actually just rather get that out in the open. It might not be a comfortable or fun thing to do, but I just find it much easier when it's out there.


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