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Original poster

To feel down when people say I look well with a chronic illness?

33 replies

RunkleC · 07/04/2026 10:33

I am hesitant to post here as I know how brutal AIBU can be, but I just need to get it off my chest and maybe someone has some helpful advice on how to not let these comments get to me?

I was diagnosed with endometriosis 7 years ago and diagnosed with ME/CFS a couple of years ago. I ignored the ME diagnoses, refusing to believe it and instead put my symptoms down to the inflammation that’s always in my body due to endo. Both of these conditions are chronic and I just have to try and manage them. However, work has always been difficult for me and leaves me feeling quite unwell but I’ve been pushing through. In February I couldn’t push through any longer and ended up bed bound, signed off work for 4 weeks while I rested and tried to feel better.

I am now back at work but I have had to be really clear with my boss that my issue is chronic and isn’t something that’s magically going to get better, and so I have had reasonable adjustments put in place and I am currently on a phased return. My boss has been very understanding but other people at work who I would consider close work friends keep saying things like “good to have you back, you look so well!” But I’m not well. I don’t want to be depressing and doom and gloom so I try to just explain as best I can but they just keep coming back with “but you can’t even tell, you look great” and these comments upset me so much. Because I was scared of people not believing me because I don’t look ill, and this just reinforces my fears. I know it doesn’t matter what they think, as long as my boss understands and is being supportive. But I can’t help the comments affecting me. I don’t think badly of these people, because I know that their comments are said with good intention and they’re trying to be kind and make me feel good about myself. But when I’ve been up in the night in pain and am so fatigued and dizzy that I’m wondering how I can get through the day, and know that I’m going to spend the next few days in bed, for people to be like “wow you look so well” is really invalidating for me and doesn’t make me feel good at all. Especially when I explain that what I have is chronic and I’m not exactly recovered, their responses just feel dismissive and like they don’t believe me.

I know some people are going to just tell me to ignore them, and they’re just trying to be nice. but my brain doesn’t work that way. I end up just saying thank you and moving along. If anyone else also has to deal with this, how have you learnt to not be affected by it?

OP posts:
Original poster
RunkleC · 07/04/2026 11:03

Heronwatcher · 07/04/2026 10:47

You’re over thinking this. They are just trying to welcome you back and reassure you. Just smile and say something like “thanks, I’m still getting there but appreciate the compliment.”

Being worried about people thinking you’re making it up is a different issue- and there’s no way a good boss would take away reasonable adjustments, supported by medical evidence, because a few people at work think that you “look well.”

I know it is difficult but IME those who manage chronic long term illnesses well are those who do try to maintain a positive attitude. It’s great that you’re still in work but try to lean into the positivity rather than see it as undermining.

Thank you, this is really helpful and I appreciate it ❤️

OP posts:
Original poster
RunkleC · 07/04/2026 11:03

FoxLoxInSox · 07/04/2026 10:44

I too have a lifelong life-changing disability. When colleagues tell me on my return to work “good to see you - you’re looking really well” I assume they mean:

  • they’re pleased to see me
  • they want to pay me a compliment to boost my day as they know what a shit time I’ve had
  • they find the sight of me quite cheering because they’ve missed me
  • theyre relieved that I don’t look at death’s door any more
  • they’re being thoughtful by paying a compliment
  • they’re using it as an icebreaker
  • they’re using it as a subtle and sensitive way to ask about my current state of health and what I went through whilst off work.

I wonder if your sensitivity comes about because you’re sensitive to ME still being a bit of a contentious condition in some quarters - so you’re hyper-vigilant to any signs that people might think you’ve been imagining or exaggerating your (very real) struggles?

thank you, I really like the way you have framed this and is a new way to look at it.

dont get me wrong, if a random colleague said this to me, it wouldn’t bother me. It’s just the fact that they’re my friends who I see outside of work and I speak to on a regular basis and they know all about my illness and symptoms. So it makes me feel very unheard when they bring it down to my looks, as if that’s what’s important. How I look does not have any impact on how I feel. And if I tell you I’m still not great but trying to manage, focusing on how I look is irrelevant??

But yeah it’s my own issue, which is why I am trying to find a new way to frame it in my mind so that I’m not affected by it. I know they aren’t doing anything wrong, it’s my reaction to it that I’m trying to change

OP posts:
Badoingyface · 07/04/2026 10:57

I do get what you mean and you're not unreasonable to feel however you feel, but from your colleagues pov I'm sure it really not that deep. I think pp's idea of developing a throwaway response that acknowledges you don't feel well but keeps it fairly "light" and work focused is good.

@Starlight1979 - do one. You clearly have no clue.

Heronwatcher · 07/04/2026 10:47

You’re over thinking this. They are just trying to welcome you back and reassure you. Just smile and say something like “thanks, I’m still getting there but appreciate the compliment.”

Being worried about people thinking you’re making it up is a different issue- and there’s no way a good boss would take away reasonable adjustments, supported by medical evidence, because a few people at work think that you “look well.”

I know it is difficult but IME those who manage chronic long term illnesses well are those who do try to maintain a positive attitude. It’s great that you’re still in work but try to lean into the positivity rather than see it as undermining.

FoxLoxInSox · 07/04/2026 10:44

I too have a lifelong life-changing disability. When colleagues tell me on my return to work “good to see you - you’re looking really well” I assume they mean:

  • they’re pleased to see me
  • they want to pay me a compliment to boost my day as they know what a shit time I’ve had
  • they find the sight of me quite cheering because they’ve missed me
  • theyre relieved that I don’t look at death’s door any more
  • they’re being thoughtful by paying a compliment
  • they’re using it as an icebreaker
  • they’re using it as a subtle and sensitive way to ask about my current state of health and what I went through whilst off work.

I wonder if your sensitivity comes about because you’re sensitive to ME still being a bit of a contentious condition in some quarters - so you’re hyper-vigilant to any signs that people might think you’ve been imagining or exaggerating your (very real) struggles?

FaceBothered · 07/04/2026 10:41

"Thanks, looks can be deceptive. Now, what have I missed? Everything been ok while I was off?"

It's just a throwaway compliment, so just develop a throwaway reply.

No-one else is going to be thinking about it even 2 minutes later.

GetOffTheCounter · 07/04/2026 10:38

I can't say much to help properly I am afraid. But just to say I have fibromylagia and understand how utterly dreadful you can feel while still looking 'okay'. And how hard that is for outsiders... plus the fear you may have (at least I do) that people think you are lazy because they personally cannot see what it's like for you.

Thanks
Starlight1979 · 07/04/2026 10:37

My boss has been very understanding but other people at work who I would consider close work friends keep saying things like “good to have you back, you look so well!”

they just keep coming back with “but you can’t even tell, you look great”

I don’t want to be depressing and doom and gloom

I disagree. This is exactly what you want.

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