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

[RunkleC]

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?

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.

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, 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.

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?

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.

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.

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

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

I can relate to this. I had cancer and I am still on some strong treatment for it. If you look at the support material it’s a REALLY common issue with cancer. Especially with my type of cancer because treatment for 10 years is common which chucks you into extreme chemical menopause.

Consider what’s the alternative to what your colleagues are saying? To tell you that you look knackered ? 6 months after I came back my manager mentioned that when she’d first met me I’d looked really pale and drawn but I looked much better now. I definitely wouldn’t have appreciated hearing it at the time ! Much better hearing “you can’t tell” about my fake eyebrows and wig than the truth .

For me I dealt with it by using my reasonable adjustments. It was tempting to work through lunch and work late like I used to but it’s not helpful for me now, I just pay for it later. And people have got used to it.

If people asked “you alright now?” About the cancer I would just respond with “yeah I’m still on some gnarly drugs so not 100% but I’m happy to be back at work”. I would suggest you work out similar response , like “thank you, I feel bit knackered actually so I’m glad it at least doesn’t show! “

Also to add I especially feel self conscious because I have reasonable adjustments to manage fatigue but outside of work I am a physically active person. Im sure people think I’m taking the mick sometimes but my manger spots that I look exhausted quite frequently, I work 4 days so have accepted a big pay cut …, so why would I care what others think?

I can sympathise OP. I was multiply injured in an accident some years ago and have had a very long recovery. I will never be completely better. I have pain every day and will do for the rest of my life. But I have learned to live with it and to push myself despite my limitations and to all intents and purposes I look "normal".
I get lots of "you look well" comments and they don't all mean the same thing! Some of them mean "Wow, you're doing fantastically despite your problems"and some of them are definitely code for "Doesn't look like there's anything wrong with you to me, why aren't you working?" And most are probably just a throw away polite comment.
But yes, some people do sometimes use comments like this as a dig, and especially when you are feeling vulnerable it is easy to let them get to you.
Over the years I have learned to let it go over my head. I know the reality of my life and have no need to apologise or justify myself to anyone. Plus I have just spent the best part of a decade trying to become "well" even if that now means something different to what it did before my accident so if people think I look it I'm winning! I'm also very careful about what I show people. My social media is made up almost entirely of positive posts and "wins". Like yesterday we had a family day out and I posted pictures of us all out walking in the sunshine. Today is a different story. I'm currently still in bed and am psyching myself up to make the arduous journey across my bedroom to the shower. But I'm not going to advertise that I overdid it yesterday and feel like complete shit today. I think a lot of people with chronic health problems are like that. We don't want to be seen as whingers or to share personal details of our conditions so we project a very positive image to the outside world.
You can't win really. If someone wants to think ill of you, they will. Let everyone know the miserable details of your life and you'll be told that you are too negative and aren't doing enough to help yourself. Put a positive spin on things and you're obviously swinging the lead, can't really be in pain etc etc. You can't change other people but you can change how you react to them. You know* *the truth. I know it's easier said than done but try to accept the genuine compliments and let the digs fly over your head into the bin where they belong.

I completely get you, op. I'm chronically ill and had to give up work (ran my own business)!at Christmas. I've had surgeries, have drain things in, a host of other things but I look fit as a fiddle (if a little plump) and very young for my age. The rosy cheeks were still there even when I had the beginnings of sepsis.

It's got to the point where I have to immediately explain the desire to normalise and not take things at face value to medical staff or just bring my consultant DH to back me up.

Everytime I see any friends they comment on well I look. Those close to me know that I'm ill but it's hard to say to anyone else. I just don't feel believed most of the time and I really think how I look oakys a large part of it.

I must add though, that my gp is amazing and has been hugely supportive throughout. We have a bit of a laugh about how well I look sometimes!

They're pleased to see you and trying to say something nice to welcome you back!

So just say something cheerful in return. "It's good to be back. It sucks when my body refuses to cooperate with life!"

I work with someone that has chronic fatigue and we are always pleased to have them back as the rest of us have to pick up so much extra work when she isn't in! (We are teachers so GCSE and A Level classes need covering).

I get it. Even have the same issue at the doctors with diagnosed illnesses 🤪 I am migraines that mimic striker 3-4 times a week, horrible low blood pressure and severe asthma. I have just learnt to accept it as don’t want to say how I’m feeling all the time. I’m very good at masking being unwell even with my family. However every day is a challenge of fatigue, pain and feeling like my chest is being crushed.

My work wouldn’t make reasonable adjustments and medically retired me :(

Its nice they care and are saying these things from a kind place I’m sure :)

I have an invisible condition and totally understand where you are coming from. ‘Oh you look alright’ is one comment I get a lot.

How is that gentle 🤣

What would prefer they say?
Can I ask, do you find you spend a lot of time being introspective?

I also have ME/CFS (plus a few other related chronic conditions). I also find this frustrating so YANBU. To be fair, I do look incredibly well and I do try to remember people are trying to be nice. But when it’s somebody who knows me well, it definitely can feel dismissive. I think it is very confusing even for my close family because no matter how many times and how many different ways I try to explain to them how unwell I feel, what they see with tbeir eyes says the opposite. So even though I think most people accept that I am unwell, I don’t think there is a single person who has anything close to an understanding of how ill I am. I then feel kind of guilty explaining my symptoms to people and wonder if they think I am exaggerating.

OP, I recently attended a series of chronic illness seminars at Guy’s in London. This exact topic was a big focus of discussion in one session so I’m pretty sure it’s an issue many people with chronic illness experience.

Maybe to them you do look good. Would you prefer them to say you look awful?
I think you’re reading too much into it and should make try and take it as the kind comment it’s intended to be.

I have chronic conditions myself and I know what you mean. Sometimes it's a just throwaway compliment and the people saying these things are being friendly. Sometimes people say it because they think you are lying or exaggerating how unwell you are. The problem is that you can't necessarily tell which group they fall into.

The approach I take is to act like they are being friendly and come back with my standard throwaway response to the throwaway compliment.

It's not that I believe they are all being friendly, it's more of a deflection technique. If they really are being friendly, it soon becomes apparent. If not, I don't want to be discussing my personal health information with someone who believes I am a liar.

I'd hope it's meant with kindness and positivity.

Though I certainly wouldn't keep saying 'you look so well' to someone. I'm disabled myself and I don't really like people saying how well I look. It sounds hard for non disabled people to understand but it's almost like it has another meaning.

But it rarely does and is usually meant with kindness I think. I hope.

Yep it's so difficult! as others have said, try to take the stance that they are saying from a position of care and kindness, regardless. We can only affect how we respond to things, not how people are. Also, stress is a major factor in making our conditions worse so you're doing the best thing by 'being positive'! your manager is the only one you need to be entirely honest with x

I have a chronic hidden disability too OP and most days I feel utterly, utterly shit. The downside of hidden disabilities though is that nobody has any idea how they affect you physically and mentally and from the outside you can look fine, as do I.

I get loads of people telling me how well I look and in cases where they genuinely seem to mean I just let it roll off me and tell myself that even if I look like crap at least I don’t look it 🤣

What I really hate it people telling me I look well when I know that I don’t. I totally understand that some people just feel awkward and don’t know what to say, or they are trying to be pleasant or friendly etc, but it still really affects me. I feel ill and I know that I look ill and their platitudes really make what I go through feel invalidated. I don’t take it personally though as I know there is no harm behind their words, I just accept that it’s another crap part of hidden disabilities. I usually just take a deep breath and find an excuse to walk away.